Hey all! I just found the thread. :smack
For those who don't know, here is a condensed history of Ian. Ian was born 3 months early and spent the first 110+ days of his life in the NICU at a local hospital.
During that time, Ian contracted multiple strains of meningitis that affected his brain in many ways. Some ways were exposed early, like when we found out that he had hydrocephalus, a condition in which the brain cannot properly absorb spinal fluid. He received his first shunt right after his first Thanksgiving undergoing the surgery at Children's Hospital in New Orleans, over 3 hours from home. 20 shunt revisions later over several years, everything is functioning well.
During his first four years, Ian was a happy, normal little boy. He was developmentally delayed but was catching up.
Then on a summer Sunday morning, Ian had his first grand mal seizure. This hit us out of nowhere. He was treated at our local hospital and then we followed up with a neurologist at Children's Hospital. Ian went in for his first EEG and that's when we found out that his seizure activity was so high that he should have been in a vegetative state. We were told that Ian had global brain damage, and as he grew and different sections of the brain were accessed, if the area was damaged, he would have a seizure.
We would later discover that, unlike most people with epilepsy who only have one type of seizure, Ian has multiple types and has been on several types of medication. Depending on time of year, growth spurts or the amount of sleep he has had, his seizure count can range from one to two to sixty to seventy
a day. From November of 2012 to June of 2013 he was having 60+ a day and had to miss the second half of the school year. It was during this time he had a vegal nerve stimulator implanted to send a burst of electricity to the brain to interrupt the seizure activity. This, along with another change in medicine, has kept his seizures manageable so he can attend school, he is in a self contained special ed class, and learn.
In 2012, we began looking into getting Ian a service dog. What we found out was amazing and surprising. First, seizure alert dogs are not trained to detect a seizure. This is a gift they are born with. Secondly, because of the rarity of this talented dog, their cost is in the $30,000 range. Finding this out, we set out to train our own. We thought we could do it. We didn't realize until we talked with a certified trainer what goes into training one of these dogs. First of all, the dog has to have the same physical clean bill of health that you find in military working dogs and police dogs. Secondly, the dog cannot have any kind of anxiety issues or behavior issues in public. To properly train and certify a service dog is around $1,500 to $1,800. We also learned during the 2012-2013 seizure outbreak that Ian is getting too big for us to be carrying or supporting. So we asked the trainer if she could train for mobility also and she said yes. Ian also has autistic tendencies and we have noticed that he is calmer around our dogs.
Ian is an awesome boy with a great personality. What he is able to accomplish on a daily basis, especially at school, is amazing. We are saddened to know that the seizures have robbed him of some of his mental and physical abilities. We honestly believe that had he not had the seizure disorder, he would be a normal little boy.
Well, I've taken up enough of your time so I'll sign off now. If you have any questions, please ask. I don't have any issues answering any type of questions.
