Zaki's Journey

Zaki has Doose syndrome. www.doosesyndrome.org His seizures started at 4 months old. He has had a variety of seizure types. Myoclonic, astatic, tonic clonic, absence, prone to NCSE, most recently he started having tonics. He stops breathing during these. Fortunately they are short. Less than a minute, but you cannot imagine what it feels like to hold your seizing child’s body praying for the seizure to stop so he can take that next breath. Subclinical activity has always plagued Zaki. These are seizures that we do not see with our eye, but his brain is having a seizure. His EEG prior to starting CBD showed subclinical seizure activity every 10 seconds during the day, and 2 to 3 times more frequent at night. They are short .5 to 1.5 seconds….but with that kind of frequency. We have had issues with retention in learning, delayed development, toileting; autistic tendencies etc. etc. 17 pharmaceuticals and the ketogenic diet have failed him, (did you know after 4 pharmaceuticals fail, the odds of finding one to control the seizures is .8%? That does not give a family much hope!) We have tried alternatives like acupuncture, chiropractic, muscle testing which led to chelation of immunizations. Cranial sacral therapy, energy work, we have seen an iridologist, and an herbalist… you get the picture here: if you wanted to take my money, I would let you, just please help my boy.

His NCSE episodes present (stops talking, then stops walking, stops eating, (we can still syringe fluid in) but then he stops swallowing.) He had been like this for almost 10 years. I often wondered through these episodes who he would be when he came out, and if he would come out at all. We have had him with 3 teams of docs over the years. He was receiving hospice palliative services. I just could not see his little body and brain taking much more. Zaki has had peaks and valleys over the years. Like many children with a catastrophic epilepsy diagnosis. His seizures have morphed over the years (and we are dealing with something new) At his worst 1000’s of seizures a day (an EEG at the end of 2008 showed 200 clinical seizures in an hour) but his average was usually 250 or so a day. Some side effects that he experienced on traditional medications were: insomnia, terribly cramping body pains, anorexia, hair loss, bone loss, weight gain (his weight doubled on one medication), incoherence, drooling, aggression, and aggravation of seizures or a new seizure type onset. He did not sweat for 2 years on one medication, loss of cognitive abilities including speech, anger and aggression, self-injurious behaviors, he has cataracts from long term steroid use, hypertension etc. I could go on and on.

By May 2012 we were not in a good place. 60-250 seizures every night again; basically every time he slept he would have a seizure every 2-10 minutes; these are brief, but violent. I describe them as putting paddles on his chest and waiting for someone to holler “clear” full body electrocutions. He was also having daytime absence and myoclonic, and recently started ‘self-reporting’ heart attacks. He has never been aware that he even has seizures, so that was scary. All of this in addition to seizures where he would stop breathing.

The night before we started CBD he had about 200 seizures. They night he started he didn’t have any! On 10/1/12 about 3 months into this we had an EEG. Zaki had been retaining what we were teaching him like his colors and writing his name; he started doing very cool things like pumping his legs on the swing and humming - - which he has never done before. The EEG still showed subclinical seizures, still .5-1.5 seconds… BUT he had 12 in the entire 24 hour period!!!! He used to have that in two minutes!!!! He did not have any clinical seizures at all. His last clinical seizure was 10/03/13, after almost a decade of dealing with almost daily seizures, I get to meet my son! He is almost off of pharmaceuticals. He is happy, healthy, at the time of this writing 9 months seizure free, enjoying being a boy, scaring me on his bike and skateboard! It is fantastic. He has an opportunity at life now. Thank you Realm of Caring! Thank you Stanley’s! Thank you God!