cheryl t rose

spreading epilepsy and cannabis awareness.constantly fighting for the rights of those who cant

[cheryl t rose @cheryltrose]

AMAZING POST!!!

HAYLEYS WHEELCHAIR HAS BEEN FOUND AND RETURNED!!!

Such an incredible blessing today!!
So very grateful!

[cheryl t rose @cheryltrose]

Did u know?

On the ketogenic diet prior or during catamenial time, many females need to either do a short /half fast or extra fat bombs.
This can help with drops in ketones and hormone fluctuations triggering seizures.

[cheryl t rose @cheryltrose]

Never Give Up!
Today we begin incorporating the Nemechek Protocol for natural gi health to the ketogenic diet.

Hays weight is back up and potassium levels have been in range for 8 weeks and stable with the... https://t.co/hCNDc4GVqk

[cheryl t rose @cheryltrose]

Mixed blessings...
We have not yet recovered Hayley's wheelchair and it is taking a real toll on her physical health.

The over exertion she has faced due to not being able to have her chair is triggering... https://t.co/dPeWNyiDvo

[cheryl t rose @cheryltrose]

We are still hoping to recover Hayleys wheelchair.
Here is a pic of the type it is and a list of all the customization that was done to meet her medical needs.
The roho pads are for the feet and the back... https://t.co/IGJlOyA7Wn

[cheryl t rose @cheryltrose]

Some Low Life stole Hayley's new specially made wheelchair.

Police file has been made.

I can't beleive someone would steal a wheelchair that is clearly built for specific medical needs.

My heart is broken.... https://t.co/kM3g9u0XqM

[cheryl t rose @cheryltrose]

In just over 24 hrs it will b Hayleys birthday.
In the last 24 hrs Hayley has had 3 grand Mal's and 2 partials requiring prns to stop.
At this rate we can't really get on a SkyTrain without alot of medicine and... https://t.co/rG6CzGwBTZ

[cheryl t rose @cheryltrose]

Its been a bit quieter around here.
Hays still very messed up from all the additional seizure activity.

We are vaping every 2-3 hours to help hold off the seizures better.
It does help but its not realistic to... https://t.co/1t2UtMOUKO

[cheryl t rose @cheryltrose]

Grand mal this morning.
Then a partial that took 1 hr, diazepam and 55 minutes of vaping (started with having to help purse her lips around the vape with her just breathing as she could in mid partial with loss... https://t.co/2VAtIECO3U

[cheryl t rose @cheryltrose]

Well, spoke with vgh, met with our dr and hay is now on ongoing blood testing for electrolytes ect every couple days or anytime our dr calls us and tells us to go to the lab (fast track return card for unlimited... https://t.co/5Hjk14HbBq

[cheryl t rose @cheryltrose]

How much of an impact did status and no keto diet make?
'the long seizure made me feel like when I was 15. ' hay remembers the recovery from the last time she hit status epilepticus.
' I feel like I did before... https://t.co/pgh3QZsQJR

[cheryl t rose @cheryltrose]

Something everyone should pay attention to in regards to vaping...
Hayley has always used vaping or inhaling as a prn and 3x a day .

Now because it helps stop seizures in its tracks it will b an ongoing thing... https://t.co/bJcy1bS3MN

[cheryl t rose @cheryltrose]

I apologize for the gap in updates,
Hayley was released last night from vgh. She was exhausted and under the impression we were taking the bus home...then we got out the emergency doors and what did she see?... https://t.co/v4FTZC7Ptp

[cheryl t rose @cheryltrose]

And now we have a nocturnal seizure

[cheryl t rose @cheryltrose]

It didnt take long once we got in for neurology and internal medicine to run enough tests to decide what to do for the next few days.
Ketosis is giving hay about 65% seizure reduction.
It is also making her... https://t.co/saJ6S7zpVX

[cheryl t rose @cheryltrose]

Hayleys potassium is only at 3.1 still... Digestion is terrible and completely watery stools.

We r being released from local hospital and then vgh wants us to go right to thier emergency department for admittance.

This journey is not over....

[cheryl t rose @cheryltrose]

Hayley " I like watching my heart beat on the screen, cause it looks like lightening bolts and I can't watch lightening"

Always finding a silver lining..
#mywarrior

[cheryl t rose @cheryltrose]

Potassium is going up again and they r now doing half dose half speed so it doesnt skyrocket.
We will stay here for monitoring / labs and see a gastro specialist in the morning to see whats going on with her digestion.

[cheryl t rose @cheryltrose]

Potassium went up...then back down :(
Looks like we r in er on heart monitor till potassium hits normal levels then will b moved to another ward to ensure she stays stabilized before we will b going home.
Most likely another day here for sure.

[cheryl t rose @cheryltrose]

She's not metabolizing well.
Severe low levels of potassium and magnesium even with her supplements.
QT is slow.
They asked about 'do not recesitate' orders.
I told them to recesitate her and bring her back to me if anything goes wrong.

They r trying to stabilize her