Hi everyone! I cant believe that we have 6 members in the first hour! Partly, that makes me really sad. I wouldnt wish battling ESES on anyone in the world. Partly, it makes me really happy! My son, my family and I went through the last 7 years alone. Beyond our Neurology team, no one in my life had ever heard of ESES. I was left to my own devices to figure things out and its been the biggest uphill battle of my life! The fact that we can connect with other parents going through the same thing is awesome! My name is Laura, Im 35 and live in Seattle with my husband, 14 year old daughter and my son Nathan who is 10 (11 in March). Nathan was diagnosed in 2007 with Rolandic Epilepsy and ESES. Today, we are still dealing with the ESES which is down from greater than 90% of the time during sleep to between 50-60% of the time. That decrease has not lessened Nathans delays. Nathan has an IQ of 52 and functions at a 4-6 year old average age according to our most recent Neuropsycology testing. Sadly, has hasnt come too far with cognitive and fine motor related skills since he was diagnosed. He cant read or write or tie his shoes. He still has accidents probably 60% of the time at night. His speech is pretty difficult to understand if you dont know him (and sometimes for us that know him the best!). We have done so much private therapy and private tutoring and dont really make headway. Everything is a steep uphill battle in these areas. We will never give up! We try to focus on the positive. Nathan has the biggest heart of any boy Ive ever met in my life. Hes hilarious and sensitive and a really good friend. Hes an amazing son. His vocabulary is huge and he says the most profound things sometimes. He can be so surprising and hes so much fun. Hes pretty good at sports and gross motor stuff, and has played on soccer and baseball teams for kids with special needs. Hes a really happy kid and thankfully, otherwise healthy. I believe these are the things that will take him far in life! Right now Nathan is on his 6th different medication trial for ESES. We had an ambulatory EEG at home about 10 days ago and were anxious to find out the results. We have also started the process of trying high CBD low THC oil with the support of our Neurologist, Pediatrician and Naturopathic Pediatrician. We havent started the oil yet, but we have the prescription and medical marijuana card and we have the oil. We are just waiting to start when the time is right. I look forward to talking with you all more. Feel free to introduce yourself and help get this group going! :) - Laura
Posted on: Mon, 12 Jan 2015 04:24:11 +0000
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