Archive for June 17th, 2013

MayShowers

Monday, June 17th, 2013

May is always a rainy month. We have been doing more therapy inside my new room instead of at my yoga platform. I have a nice big room now so I have plenty of space for all my things and can workout on the floor nicely. I have pretty much had seizures every day of this month. We have talked to Dr. Luna and have raised my medications but we are not seeing a difference. My mom and dad have scheduled an appointment with a Neuro Nutrionist in Portland Oregon. She specializes in diet with kids that have seizure disorders like me. My parents had a long conversation via Skype with Carrie Loughran. She was very informative and has requested that I begin taking L Carnitine, Folinc Acid, Liposomal Glutathione,and Phosphatidylcholine. These are metabolic nutrients that are to help clean my system and hopefully raise the level of Carnitine in my body as Carnitine is a huge player in fighting off seizures. When tested for my Carnitine levels they were almost depleted and Carrie said the worse she had ever seen! So I have to get that number back up and hopefully with the increase my seizures will decrease. If it were not for the daily seizures things would be just perfect! 🙂

The other day, one of my mom’s friends in her support group posted a link of a report about medicinal marijuana helping children fight seizures. It was a very interesting report and we are trying now to find some CBD oil. Medicinal marijuana is legal in some states in the USA and is also legal in Canada. It makes sense to me that a plant GOD put on this earth has so many medicinal properties in helping cure and ease pain. CBD oil does not have THC. The experts in the lab take out the THC and only leave the CBD which is what helps with the seizures. Since I am on three seizure medications and at full dosage we are really hoping to try it and see if it can help me. Here is the link if you would like to learn more about it. http://www.washingtonpost.com/video/thefold/medical-marijuana-renews-hope-for-children-suffering-from-seizures/2013/04/24/4eb5419e-acdb-11e2-a8b9-2a63d75b5459_video.html

MariaJose has me doing all kinds of activities now. I sit at my desk and try and get Elmo to sing to me by hitting my switch button, I paint, make cards, and play with playdoh. Then later we have therapy and of course my afternoon stroll. My must favorite time of the day. I am doing things I have never done before like holding my feet for 5 minutes, bearing weight in my hands, making new sounds, and most of all I am VERY attentive!!!! I can only imagine how much better and stronger I would be if I did not have to deal with those seizures! Hopefully soon we will find a cure. My parents are working very hard on it.

All in all, May was a nice month. We were able to be here and not in San Jose, and that is always a great thing!
Love Malia xoxox