Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.

Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.

Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.

Our beautiful girl

Our beautiful girl

As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.

I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.

This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.


Hebrews 11:1 -

Now faith is confidence in what we hope for and assurance about what we do not see.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.

Thursday, January 25, 2018

Back here again.....

What in the world is going on? We are back. Again. Sigh,



This past Saturday was such a great day with my little dancer. One phone call later and it's a buzz kill.

Olivia has been having "rage" sessions again, a major side effect of the anti-seizure drug Keppra. We've been down this road before with this medication, and the timing seemed right since they doubled her dose during the hospitalization in December.

For those of you that have been following our journey for awhile, I've been trying to wean her off Keppra for years. Sounds weird, right? Why is it taking so long?

It seems like I almost get her there and then boom.....she's in the hospital. The first thing they do is double it, because, you know.....Keppra is wonderful for EVERYONE. MORE=BETTER.

Not for Olivia.

For more on past side effects, please read SIDE EFFECTS ARE BRUTAL.

It's always a process when you haven't found a medicine that works, and especially when that elusive "cocktail" of meds has not been concocted.

This time was intense but it seemed like she was doing way more self harm than usual. She was scratching her face, pulling at her cheeks and biting her hands......like crazy. Most of it was done in the ER before they settled her down. Something I hadn't seen before. Something was different.







First day in they started the wean, going down faster than I had ever done with her. Like, really fast. Every three days they were decreasing it by 125mg 2x/day.

The rage against herself was not going away.

A couple days later, one of my favorite nurses walked in to say hi and happened to notice how much weight she had gained.....especially in her face. As I looked Olivia's way, I realized that her face had morphed drastically. She had big cheeks.....bigger than normal. It was then that I realized that there was something wrong with her teeth.......and after a couple xrays it was confirmed. WISDOM TEETH!!

All four were on the move, and unfortunately, they have no room.

Olivia needs them out.....yesterday. This type of procedure is typically not done in a hospital, generally it's an outpatient procedure......at an oral surgeons clinic most likely.

It's been a couple days of navigating a path very few take. Doctors are not dentists and do not venture in the 3 inches or so between your chin and your nose. Some challenges have been presented and some protocols overturned.

Remember my snowball analogy I used in my last post? This hospitalization is completely different. Olivia is in A LOT of pain. Can you imagine having that much pain and not being able to communicate it? Know wonder she was thrashing at her cheeks, and biting everything in site.

Today we are trying to get ahead of the pain. We lost some ground and have been piggy backing pain meds to get it under control.

I'm grateful for the Hospitalist that has gone to bat for Olivia when hospital protocol leans toward discharge and reschedule. She literally can not handle one more day of this excruciating pain.

Please pray that a surgeon's schedule opens up, she tolerates the surgery and is on the road to recovery SOON!

xo






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