EMILY UPDATE

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EMILY
one year later

Emily was diagnosed with infantile spasms when she was 6 months old. Now at 5 years old she still doesn’t have a formal diagnosis. She is globally delayed and is fed through a gj-tube due to her gastroparesis. She has failed 14 Drugs and a medical diet twice. She was never a brain surgery candidate. She was having more than 100 seizures per day. Many of those made her gag and vomit and her oxygen would drop very low.

Our family made the difficult decision to move to Colorado in March of 2013. Being the first family to move here to treat our child’s severe intractable epilepsy was hard and scary.

Emily responded immediately to the first dose of Charlotte’s Web. Her scariest seizure type stopped with her very first dose.

She was weaned off the ketogenic diet and one of the two antiepileptic drugs she was on with no issues. The last drug, onfi, proved to be much worse. We weaned with the guidance of Emily’s neurologist. The reason we weaned those drugs and the diet was because they were not working and had side effects that didn’t outweigh the benefits.

Emily has been severely addicted to multiple benzodiazepines over the years. When we arrived in colorado she was taking one routine benzo and 3 “rescue” benzos that was used daily due to the severity of her seizures. Multiple doses of multiple benzos daily are extremely hard to remove.

I am so thankful we had THC to help us wean. We have to be careful with the extra THC as we learned Emily has a limit she can take before it increases her seizures. Once we learned her tolerance we were able to wean her from all prescription seizure drugs. Again, I did this all with the oversight of a neurologist. Trying to do this too fast can cause severe problems. Even death.

We saw moderate seizure control. Far more control than any of the medications she has tried before.

It took a long time to find Emily’s dosage of CBD that she needed. We continued to use extra THC for over a year because it was clear she needed it. Withdrawal can last a very very long time. Currently she is only taking Charlotte’s web again. We use THC as needed for pain, agitation etc.

Emily also only takes her oil rectally. It seems weird but her GI system doesn’t work properly and this was the only way we could get adequate dosing in. It turns out to work very well!

Emily, now, has 0-5 split second seizures. That’s right, I said zero! Many days of the week she has no visible seizures.

On a bad day when she is sick or in pain she will have a few small seizures. We have used a rescue drug (Valium) for her seizures less than 10 times in the last year. Before cannabis we were giving rescue meds 3-6 times per DAY!

We learned to use cannabis oil rectally as a rescue on those bad days.

Before cannabis Emily couldn’t hold her head up, hold a toy, rarely vocalized, and her vision was not great.

After being in cannabis for 17 months now Emily holds her head up about 75% of the time and can roll from side to side and her to stomach or back. She can hold toys that you give her. She can see perfectly and our non-verbal child is now verbal. She says mom, dad, hi, all done, ok, yes, no, and my personal favorite, oh shit (we are working on correcting that word).

The goals her therapists are setting for her are big. They think she will be able to sit independently soon. She is walking with assistive devices. She makes choices and has opinions. She likes and dislikes things.

Our girl is blooming in front of our eyes. This gift we’ve been given is never taken for granted.

We had blind faith in moving. Bankrupt and desperate we had no jobs and moved out here on our taxes. We trusted that what we needed would be provided. We worked hard and were stretched way beyond our means but here we are.

Emily success story isn’t going to happen for every child but every child should have this opportunity without having to move.

How could you ever properly thank those who made your child’s life so much better. It’s seems dramatic to say Realm of Caring and the Stanleys saved our baby’s life but they did. Cannabis and this organization saved her. Us.

 

Left: August 31, 2013 Right: August 31, 2014

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2 thoughts on “EMILY UPDATE

  1. How encouraging and blessed! Thanks for sharing your story. I hope it will help others and can be used to get this important break thru the attention it deserves so more lawmakers can pass laws to help the families who need it!!

  2. It’s a miracle! Hopefully, she will get her meds regulated. I would be interested in how you found a neurologist that is open minded and willing to prescribe cannabis.

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