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?

Grateful for... discovering and caring for myself

I am so sorry I haven't added much here in a long while. Honestly, I've been on a road rediscovering myself and taking care of my own needs. Who would have thought? We, Warrior parents... get us stuck in the down position after the wind is knocked out of us... both hypothetically and literally. 

I'm 34 years old and I am so grateful that I have finally found out, that in order for this ship to sail properly, the ship needs to be consistently maintained to stay afloat. 

My foundation is finally stable. I have confidence, I have faith and I have abundant joy in my daily life despite Izabelle's struggle.

You see, no one gave me a choice of weather or not I wanted to lead this path as a parent/individual. I believe this is my life test, my mission set forth by a higher power (possibly) and it's my job to conquer it, not submit to it. 

My mission is to continue fighting for a cure for epilepsy with all my might. I was chosen to be my child's hero and champion. 

In order to fulfill this mission, my body, mind and spirit need to be healthy. 

I created a Facebook page called Selfcare for Warriormamas. 

The purpose of this creation was not only to remind myself to take time for self care but also to help other women to remember to think of themselves first... 
not second...  
What a foreign concept? Self-first? 

Please join us!