In February 2010, we decided to prepare for Kyle’s triennial IEP and get him tested for everything that has ever been recommended by doctors/therapists. The triennial IEP is the meeting where the IEP team conducts extensive assessments about the child and discusses whether or not to continue services. One neurologist recommended a 24 hour EEG because Kyle had stopped speaking at one point in his life. Kids who are on the autism spectrum have a higher incidence of developing a seizure disorder (about 1 in 4).
We found a neurologist and after our initial consultation, we scheduled an EEG and a follow up appointment a month later. Neurology was new territory for me and I had little experience in this field. Although I had little reason to suspect seizures, I had caught Kyle staring off into space a little more when he started second grade. I had a student several years ago who had petit mal seizures. She would stare off, then start blinking and look around to figure out what was happening. Even with seeing similar symptoms in Kyle, I did not think we would find anything but I wanted to cross everything off our list before the big triennial meeting.
An EEG or electroencephalogram, measures the electrical activity in the brain. The EEG is the best way to diagnosis a seizure disorder. Electrodes are attached to the head and connected to a computer using wires. The neurologist then reads the brain waves and diagnosis a seizure disorder and determines treatment.
During our initial consultation, our neurologist kept yawning, I had to repeat myself several times and she would not allow a 24 hour test despite all the literature that supports a 24 hour test. I told Aaron we would complete the 20 minute test, and then push for the 24 hour test later. On our follow up appointment, I mentioned the 24 hour test and she said, “Oh we don’t need that. It’s abnormal.” I am glad my husband was able to attend the appointment because I don’t really remember the rest of this appointment. My heart was pounding and I was struggling not to cry. She threw out names of medications and their potential side effects like we were discussing what flavor of soda was best. She decided on a treatment plan and we made an appointment for the next month.
I was stunned. After getting his prescription filled, I went home and cried. I felt guilty that we had waited four years to get this test done. I was mad at God for allowing our beautiful boy to have yet another diagnosis. I was scared because while I understood autism due to my psychology and teaching background, neurology is beyond my expertise. I was tired. Tired that I had to learn new difficult things, tired that my son is different from other kids, and tired of needing to be a better parent than my other friends with “normal” kids. I felt that I had accepted autism and done a great job learning about it and helping other people. But now I had to learn about something totally different.
My pity party lasted exactly 24 hours. While Aaron was trying to get me to see the positives (insurance, that we caught the disorder when we did and family support), I chose to focus on the energy that would be needed to stay up to date and the time that had already been wasted. I kept thinking “What if we had gotten an EEG when it was recommended when he was three? Why did I wait so long?”
After my pity party, I got back to work. I read about his new medication, emailed his teacher and aides and discussed with the principal about possible side effects. Kyle has absence or petit mal seizures. He “blanks out” for a few seconds. A seizure can look like he is simply daydreaming. His teacher and aides now needed to keep an eye on how many times he “blanked out” during the day. The first medication he was given has some scary side effects including a negative change in attitude. I did not want him getting into trouble for behavior he could not control. The school Kyle attends is very supportive and they listened to me. We are true partners in his development.
Again I found that we entered a world I never knew had existed. Every month we have to get up early and go for routine blood tests which are reviewed at his doctor appointments. The first few times we went he screamed the entire time and the phlebotomist attempted to take blood multiple times. Every four months he gets an EEG.
At first, he was scared but now he knows what to expect. He was on one medication which made him more irritable but after an EEG his doctor switched him to another anti-seizure medication. Now he is on two medications. Every day we get up at 6:00 am for the first dose…every day…school day or vacation…rain or shine. I receive reports and I cannot understand most of the words on the paper. I usually skip to the conclusion.
As we are figuring out which medication is best for Kyle, he is losing ground in school. Since he is having seizures he is missing parts of lessons. Homework takes longer and since he started third grade, homework is a nightly fight. He is more irritable since starting medication. He has become very aggressive towards Tara and other kids at school.
Despite all obstacles, I continue to fight for him. Our neurologist will shortly become our old neurologist. We have an appointment for a second opinion in February (the wait list is 3 months). Our current doctor does not listen to me, writes incorrect reports, does not listen to his teacher and is unorganized. She feels he is getting better while everyone else in his life thinks he is getting worse. Our insurance will no longer cover his medications so our pharmacy bill went from $5 per month to $100. Despite several calls explaining the situation, they refuse to admit the fallacy in the reasoning of the policy.
This journey is more frustrating for me. I have always tried to determine what is Kyle and what is autism but now that he is on two medications for his seizure disorders, I am at a loss to explain what is causing his behavior. My fervent prayer is that we find a doctor whose opinion and treatment plan I can trust. I hope that this next doctor will consider our family and his teachers as partners in his life.
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