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.
What an amazing mother you are, so in tune with your daughter. Watching, "preying" and "praying" for answers. You are marvelous.
ReplyDeleteDoctors often think they are Gods because they have a white coat and they don't listen to parents very well.....my mom even worked in the medical field. Last year my parents pulled me out of a local hospital against medical advice because they felt the doctors were making bad choices. Social services came unannounced to investagate but in the end it all worked out.... However l have been officially dismissed from the only urgent care facility in our rural area meaning I have to go to the er when anything after hours happens..also was dismissed from my primary care doctor... There are only like 2 other choices in the area but thank God I got a man who cares now and has helped me and my family so much!
ReplyDelete