Jason & Brian

MYTWINS.ORG

Jason & Brian

Jason and Brian were only 3 years old when they were diagnosed with Landau Kleffner Syndrome or LKS. LKS is a rare form of childhood epilepsy which results in a severe speech disorder. Both my boys were born very healthy and full term. by the time they were 1 they both had about 15 ear infections each which then lead to a developmental & speech delay. By the time they turned 3 they were slowly catching up to their appropriate age level. Then near almost 3 ½, we were devastated to find out that both boys have epilepsy and are having daily seizures. After seeing their speech and understanding of language get worse, they had a 24 hour EEG, which diagnosed them both with Landau Kleffner Syndrome. The nuerologist did not tell us anything about it, Infact he told us to find a new doctor and that he could not help us with this horrible diagnosis. At home I researched this syndrome on the internet only to find that my boys displayed all the symptoms of LKS. The 24 hour temper tantrums and not sleeping through the night is very stressful. Brian could no longer say his name or respond to anyone around him. He would just throw his toys in a repetitive motion, stare at running water or walk in circles all day. He did not even know how to open his Christmas presents. The more language they lost, the more temper tantrums we had to deal with. Not to mention the behavior that all the medicine has caused for over the years. Both the boys have ADHD and autism and are the only set of twins known to both have Landau Kleffner Syndrome

My boys spend a lot of time in the hospital or in the car driving to the hospital. The medicine has caused them both to get Pancreatitis and along with many other side effects.
Both boys have been on many different medicines, The Ketogenic Diet, and eventually had the VNS implanted to help with seizures. Over the years the boys have been diagnosed with other life long illnesses such as Celiac Disease, Reactive Arthritis, ADHD, Bipolar, Anixeity Disorder, Bleeding Disorders, and Immune Deficiencies. They have had to have many tests, procedures, EEG’s , MRI’s, Bone scans, Biopsy’s and more. We have gone to see many doctors, including 7 neurologist's to help them. They are both on a gluten free diet and are very limited to what they can eat. When Brian gets sick his arthritis flares up and he needs to use a wheel chair. Brian has unfortunately had many issues with his behavior. He was admitted to the psych unit 3 times to help him with his anger.

Hospital photos

BRIAN'S EEG 3-26-09