What the '=#%&'?

Is some kind of spiritual obstacle course or some type of mean trick!?! Do I really need to run marathons as a mom on a day to day basis! Can someone clone me so I can be a nurse, a caseworker, a pharmacist, a doctor, a playmate, a psychiatrist, a entertainer, a friend...? I wear too many hats. Over and over I'm left with questions like: 'Why would God do this to us?' It's plain cruel and unfair!!!  This hard work can't be all for nothing either! We can't just live and die. There must be a reason, some direction, some bigger plan, some chance of enlightenment!' I'm loosing the people I love to darkness, to the unknown for hours, days, weeks, months, years... I just can't accept so much of the world's suffering. Why are some of the sweetest souls tortured while others appear to be left unscathed? Or does everyone have their own version of misery?

Over the past week I've been kicked, bit, head butted, had objects hurled at my head, I've been growled at... I've had to clean urine out of my child's clothes and bedding because of these damn seizures (Diapers/depends are waiting for us at the pharmacy)! I've had to hold my child in safety holds to keep us safe. Belongings have been destroyed. I've made hundreds of phone calls for both neurological and mental health like a phean. Hell, I've even considered hospitalization. Like the kind where she's in a ward with paid professionals who know how to ease medication transitions. Tonight she refused her meds from me after a seizure. It's so hard working my ass off trying to help this little being then have her snub me! What a thankless job this can be but yet... Somehow so rewarding. Life can be full of so much joy but also so, so, SO much pain. 

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!!!

The Vicious Cycle returns

Crash!

Bang.

Pop!

My heart smacks down to the ground. 

My head is spinning. 

My hope diminished (for the moment).

So many ups the past few weeks... The come down is even more vivid and intense now. 

My once coherent angelic child has left, and her counterpart, 'Dizzy Izzy' is showing herself again. 

Seizures steal. Time, Vitality, Balance, Energy, Experiences and Love. 

Spinning like a top, she is 'rolling' off of diasapam. Like an addict in withdrawal, she becomes insane like a wild animal.

She can't hear me... Her brain is unwired... 

Body. Constantly moving. Falling, tripping, breaking, acrobatics on crack, rocking, hopping, climbing, throwing.

Voice. Incessantly talking... Babbling so I cannot make out the words. Perceverating. Broken record. Forgetful. 

Heart. Seeking love and attention in all the wrong ways. 

Must be so scared and lonely.

Can't embrace her... She's like a injured moth trying to get away... I don't want to get head butted in the lip again... Or kicked, poked, licked...

Soul. I put her to bed telling her to put her hands on her heart to give herself the 'healing energy'. I advise her to tell herself: 'I do not feel good in my body. I love and accept myself.' Repeat.

She's a magical child. Energy work will be good for us. Time to reconnect and find our balance just in time for another cycle. 

The cycle IS vicious. 

In love

I'm in love with the sweetness that is my daughter, the innate strength she holds, the caring selfless nature she possesses, the tender love she sheds on all who she lets in close. 

Izabelle underwent the Vagus Nerve implant surgery on Tuesday. Honestly and sadly, the outpatient procedure was nothing compared to our weeks spent at Boston Children's hospital hooked up to leads, sleep deprived and off medication. 

She is the best patient! They all loved her!

I cried for a moment when I saw these for the first time but honestly, technology is fast forwarding the healing process and by summer these will be faint white lines just like the one from my C section.

Izabelle did amazing. She woke up easily after the procedure and got to go home by 1pm the same day.

The hardest part so far was our third day home. The morning started with seizures. Later, she became very sick to her stomach. Her body must have been rejecting the anesthetics or was expelling built up fluid in her esophagus from the breathing tube used during surgery... I'm not really clear on why the delay in these symptoms. It just wasn't fun. 

Last night, I laid on the floor staring at this beautiful face. She's a trooper. I'm in love with my daughter. 

Heartbreak

What a challenging week. We traveled to see two nationally/locally renown neurologists... 

No need for details... we got nowhere... Still in the same boat. If anything, I think it convinced us that the Vagus Nerve Stimulator is our last true option. 

Thanksgiving night, my mother and I traveled half way to Dartmouth Hitchcock and stayed at a hotel. 

We arrived at 12:30 in the morning Friday... 

The first seizure rose my mother and I abruptly from our sleep at about 4:45am...

After the seizure subsided... My mother broke down in tears... 

Mother: 

It's not fair... (Classic response)

I didn't want this for you Rachel...

There must be an answer...

Came flooding out like a monsoon of pent up emotion. 

Me: 

Numb now to these emotions, I somehow mustered up the energy to counsel my mother... 

Despite the urge to be resentful, angry and bitter... 

I maintained compassion ... This is my life and others new to the trauma that is epilepsy have such a hard time digesting it... I get that. 

I'm grateful my mother abruptly was thrown into the trenches with me. 

The battle is only most real to those who preservere and fight each and every day until we let others in to join us in combat.. This is epilepsy awareness... We have to let others in our life experience that same RAW HOPELESS pain while we watch our sweet children suffer. 

It isn't fair.

It fucking sucks.

But I must maintain strength for my child regardless.

I must be able to see the light and beauty in the short moments of clarity and fleeting consciousness.

I could choose to be bitter whilst watching others grieve our profound loss, the 

child she would have been, had she not been tainted with this heartless and cruel condition. 

But no, I choose to be in a state of compassion and love. Xo

Medical update

So much has happened medically since I last wrote a blog entry. 

Last you heard we had a completely amazing 14 day round of seizure freedom... Honestly, I'm not sure who or what was responsible... Izabelle had had a full Reiki treatment at the common ground fair, she had an increase of Banzel... unfortunately it wasn't the medical MJ. 

After that, Izabelle's little brain went back to its normal pattern of seizing every fifth or sixth day. Only emergency a dose of diazepam will end the monstrous seizures, as they come in cycles now. We re-tested medazolam and lorazepam to no avail... 

We went to Boston Children's hospital again in October. The MRI didn't show any changes and the spinal puncture that Izabelle endured didn't indicate anything out of the ordinary for neurotransmitter levels. We tried to have the doctors test for autoimmune encephalitis at that time, but they wouldn't... we have yet to go to the lab, but that test has been ordered and approved.

We saw Dr. Sulak and his wife Dr. Saab... the most loving and pure pair of married doctors one could ever wish for. We came up with the plan to continue trying THC rescues both orally and in the form of a suppository. He also recommended that we increase THCa levels weekly with a goal of 7mg 2x's a day... Sadly, this produced more grand mals... and we had to take her off of it... The THC rescues didn't work either...

SO, this mama went on another frenzy of proactive searching for next steps...

Along with other moms in the epilepsy community, I came up with this list:

• Autoimmune encephalitis test - pending
• Visit Dr. Souhel Najjar at Lenox Hill, NYC
• Visit Dartmouth Hitchcock Epilepsy Center - Friday, November 27th (tomorrow)
• Visit Dr. K in Long Island - Total jerk and only had one suggestion... 
• Visit Mass General Hospital
• More Reiki - energy work
• VNS - DAD DOESN'T CONCUR... PATIENCE... 
• Tumeric
• Hyperbaric oxygen chamber... a no go by the PCP
• CBD in the future, again...
• IVIG - antibodies are delivered through an IV... NEURO says this is an option... now if I can only get him to follow through
• Test for tape worm.. just in case - pending
• NERF2 - Reduces oxidative stress - I want to try it for my autoimmune disorder
• Retry ONFI?