Trust mothers over doctors

It's that crazed maternal roar that comes blazing through like a storm; pushed into survival mode, I shout, I WILL NOT LET MY DAUGHTER SUFFER ANY LONGER!!! My poor baby has suffered for way too long! You saw the vomiting, the Nystagma, the slouch, but you did nothing!!! You don't listen enough! Mothers are in the front lines. All you have is a online database fill of COLD statistics. GUESS WHAT YOU NUMBSKULLS!?! IF YOU HAVENT FIGURED IT OUT YET, YOU WILL NOT FIND ANYTHING TO HELP YOU HELP MY DAUGHTER IN NUMBERS, STATISTICS AND QUOTAS... You will have to be creative, analytical and an outside the box thinker for that. Like Albert Einstein smart. Yea, that kinda smart... 

I knew it was the Banzel, my close friend Jill knew it also, FIRST HAND. We have other mothers too who would vouch that post-anesthesia, banzel becomes harder to metabolize in one's system!!! This was the cause for all the vomiting and Nysgagma! She was fine 12 hours after lowering the Banzel dose... But you aloof and stuck up doctors won't even acknowledge why that is... What!? Because it's not in your medical journal yet!? Please stop trying to fit her heart-shaped peg into your boring SQUARE HOLE! My instincts are so spot on. Are you intuitive like me? Have you watched her every move like a predator stalks his 'prey'? With first hand life experience and the ambition of a warrior, these mothers know not just as much, but often times MORE than you! Yea, without a Ph.D. from Havard, Yale or whatever other name you call your hoity toity Ivy League school. We have blazed right by you. Don't act like you are superior, wise, all-knowing. You are NOT above me. Just like as a teacher, I'm not above my students and their parents. Please, I beg you, just be my partner in this. Respect my opinion. Empower me even more to help my child! Connect me with others who may be able to help her. Can you live with yourself at the end of the day when you think you've done it all, and just quit. I never quit... You are supposed to be saving lives here, YOU DONT GET TO QUIT!!!

2015 Medical investigations/advocacy for Izabelle Hamlin: 

Medical Merjiuana - CBD THC THCA daily, THC for rescue dose trailed up to 25mg with no change - used two dispensaries and two caregivers before finding the right one 

Get a Service Animal - Pearl

Meet with Dr. Sulak - start vitamin D, Omega 3 fish oil and multivitamins 

Letter to the senator

Fight with DHHS for behavioral health  and nursing servicing 

Neuro psych evaluation 

Psychiatric evaluation - ADHD, anxiety 

Epilepsy foundation visits Izabelle's school

Start Reiki treatments

Metabolic and Extensive genetic testing 

Med trial with Banzel

Emergency med trials with lorazepam and medazolam 

Lumbar puncture for neurotransmitter level 

Third MRI - Boston Childrens 

Dr Pearl and dr Sanchez at Boston Childrens 

Visit Dartmouth Hitchcock's neurology department for Neuro consult 

Visit Long Island Childrens Hospital for Neuro consult 

VNS surgery 

Some kick ass letters: 

Tuesday morning message to Maine Med Neurology:

I'm wondering if the Onfi comes in 1mg tablets. I think some of her behavior changes are related to new side effects from Onfi, not a withdrawal from diasapam. 

She's irritable and becoming aggressive. I never saw aggressiveness with the diasapam withdrawl. Can we split her dose over am/pm 2.5 am and 2.5 pm? Or if the tablets come in 1mg we could try 2mg 2x a day?

I am also interested in what Dr. Henninger has to say as well. 

No seizures so far. She's sleeping so soundly it's a bit alarming!!! 

His reply today: 

Not a common side effect of Onfi. We could try stopping for one week and a retrial or decrease to 2.5 

My immediate reply: 

Yesterday, Izabelle become so violent and unreasonable that I had to pull over at a friends house while on the way to Portland to unhook her eeg. She was in a rage and threw every object at me from the back seat. She was also pulling my hair from her seat. This is very out of character of my daughter. She has only behaved this way with Felbamate. THIS IS NOT A PART OF THE DIASAPAM WITHDRAWL. She is merely playful and ADD with that. 

I have taken her off of Onfi myself. I will keep you posted on how she does today, but I have passed her off to her father as I have reached my limit with behavior and care taking. It's his turn. 

"Not a common side effect" means absolutely nothing to me. My daughter is not common!

If her seizures return full force, I may consider 2.5mg, but at this point, she could have very well been admitted to a psychiatric hospital if she continued at 5mg and I will NOT allow that to happen.

Embracing the moment

She lives each day in the moment. 

In pure joy and innocence as she moves through each experience. She is a symbol of strength and hope. She is pure love and creativity. 

I've learned from experiencing my child, that I too need to slow down and savor every minute. I was blessed with an angel child. I honor and am grateful that. She is my blessing from the Gods. 

She seized today. 

The educational team at school handled it. And you know what, we are both ok. It's ok to allow others to care for her to. She had one full week without a grand mal. She's been so alert, aware and age appropriate!!! It's been glorious. 

This time, she bounced back faster. We are weaning one Med at a time; in hopes of more cognitive brightening.

I live for each moment spent with her. My separation from her father is a healthy boundary that someday she will learn from. My life choices will hopefully inspire her to be authentically herself and to make good choices in who she chooses to surround herself with.

"All my prior romantic relationships; each of them happened for a reason. They were each a part of my process. 

I learned to love myself and to set healthy boundaries one day at a time. 

That was not modeled for me as a young child. 

Please don't judge 'my process'. I'm certainly not judging you by yours."

My alone time on the weekends gives me the chance to recharge so I can be fully present and in the moment for my crystal child. 

It's ok to take care of myself! It's ok for me to even have fun. It's ok for me to fall in love and focus on other relationships. It's ok to ask for help. 

This child is surrounded IN LOVE!!!