MY NAME IS DYLAN.
THIS IS MY STORY.
Hello everyone! My name is Laura McNamara. My son Dylan is 8 years old and he was diagnosed with infantile spasms/epilepsy at 3 weeks old. After many tests, it was finally determined that his seizures were caused by several brain malformations. Like many other epilepsy patients, Dylan was tried on many medications before finally finding the two that worked for him. He still had seizures but he could go for months at a time without any at all. Unfortunately, Dylan wasn’t progressing at all. He never crawled, rolled, walked, or talked. It was suggested to us at two years of age to think about brain surgery. We decided to do it so Dylan had the majority of the left side of his brain removed in 2008. He was doing great after the surgery. He started scooting around the floor on his butt, and he was very alert while watching Elmo and playing with his toys. He always bounced around while listening to music and he loved playing with his family. He would even bear weight on his legs while being held. Then in 2010 he just stopped sitting up completely and it seemed liked certain motions scared him. He went in for a CT scan and they said the cause was hydrocephalus. He went to get a shunt but the surgeon thought he had fixed the draining problem during surgery and felt the shunt wasn’t necessary. Dylan did seem to feel better and he had been two years seizure free. All was well again with seizure control but Dylan still wasn’t progressing. Then in March 2011, Dylan started having seizures. We increased his meds several times for a few weeks but the seizures were becoming uncontrollable. The surgeon said the hydrocephalus was back and he needed the shunt after all. So in May he went back in for surgery to get the shunt and that caused a whole new set of issues and it has been a nightmare ever since. He started having seizures about 5 days after surgery and they kept increasing each day. He was admitted into the hospital and his meds were increased as high as they could go and it just didn’t help. He went into status and had to be placed in a medically induced coma. He was in the coma for 5 weeks and we were in the hospital for almost 4 months. The doctors tried to bring him out of the coma a few times but the seizures wouldn’t stop. They finally told us that we needed to bring in any family that we wanted to see him. Thankfully God was watching out for him and he was finally able to be brought out of the coma. He finally got out of the hospital in August but he was a totally different child. He has mouth and tongue twitching several times a week or sometimes every day, he is very difficult to feed and I’m the only person that can feed him, and now he doesn’t try to do anything at all. He also has lost all progress he made before being placed in the coma and I know that a lot of that is from taking such high doses of seizure medications. He has started all over with everything. Even though all of this has happened, we are very blessed that Dylan stopped having seizures and we were able to bring him home. He is very happy all the time and that helps to keep us positive. He loves Elmo, music, and swimming and even though he’s 8, he is still my baby! My husband and I are feel very fortunate that Dylan will have the opportunity to try cannabis because we really feel like it will help Dylan like nothing else has ever been able to. Dylan’s medications have caused early puberty, his gums have started growing over his teeth, and they just have him all drugged up. I am afraid every day that Dylan could go into status again and we could lose our son. That’s why we had to move to try the cannabis. Everything that the seizures didn’t take from him, the pharmaceutical meds are. I am hopeful that the cannabis will help to get rid of those terrible meds and then we will be able to see our son again, only even better than before. Dylan is so strong all the time and he is truly my hero! I am so grateful to JOH for making this opportunity a reality for us. They have been a blessing for our family and I can’t wait to see the results!