Many people do not realize that most children with autism may also have a seizure disorder. Back when we first moved to Texas, we had difficulty getting professionals to diagnose Damien’s autism. Though he had been diagnosed at 16 months of age in Indiana, the diagnosis was not accepted in Texas. Therefore, we had to go through all of Damien’s testing all over again. I guess the professionals in Texas thought, at the time, that autism does not cross state lines with the child.
Actually, after going to school, I realize what was going on. Diagnoses through the school districts do change crossing state lines. Different tests are done as determined by the state’s education agency. Furthermore, the ages as to which the diagnoses can be given change. Because Damien was younger than seven years of age, the state would not recognize his autism. Therefore, the doctors in the state were reluctant to give us the diagnosis we had begun with. Now, that autism is on the rise, and we have become aware that early diagnosis is key, the rules have changed.
It was while we were going through these tests, that we discovered Damien’s seizure disorder. Below are the posts from when we first learned of Damien’s petit-mal epilepsy. They range from May 10, 2001 to June 14, 2001.
May 10, 2001
I had Damien at his counselor’s office just a few minutes ago. Damien came in while we were talking and kind of zoned out. The counselor tried to get his attention, but couldn’t. Damien all of the sudden got up like nothing ever happened, but he was wet. The counselor thinks he may have had a petit-mal seizure. We got Damien a doctor’s appointment set up for 10:30 in the morning.
May 12, 2001
At Damien’s doctor’s appointment yesterday, we found out that he did have a seizure. The doctor asked how long he has been staring of into space like that. I told him that he has every since he was an infant. He asked me why I did not inform him of this. I told him that I told Damien’s previous doctors and they told me it was just Damien’s way of tuning me out. They said it was not anything serious. The doctor thinks now that everything seems to be tied in together. He said that the memory loss, wetting, and aggressiveness might be very well caused by whatever is causing the seizures. The doctor seems to think now that Damien may not have Asperger’s Disorder, ADHD or COBPD. That is kind of a relief, but also kind of scary to since we don’t know what is causing this.
When Damien was a baby, I noticed that he would stare off into space and then just come back. He only did this once, maybe twice a month. Then in late September of 1997 Damien had a high fever which caused a Grand Mal seizure. Then it became more frequent to where it was every week, then every day. Now, since March, it has been more than once a day. He is up to doing this four or five times a day that we have noticed, maybe more. Apparently, everything has begun to progress at a very fast rate, and most likely will not slow down or stop progressing.
The doctor has scheduled a MRI and EEG for May 17, 2001 at 8:45 a.m. The results for these tests won’t be in until about 1 to 1 ½ weeks later. The doctor is got Damien in to see a neurologist sooner than July. He will be seeing him on May 15, 2001 at 3:00. I don’t know how long it will take to get the results back on this testing.
May 15, 2001
Damien had his appointment with the neurologist today. The neurologist wants to do additional testing. He said he is almost certain that Damien is Autistic. He said, “However, it could be much worse.” He said there are signs of other problems as well. He also said that there are petit-mal seizures, and they are not related to the other problems. He was totally disturbed by the thought that Damien’s previous doctors did no testing whatsoever on Damien. We won’t begin new medication until after the MRI and EEG scheduled on Thursday. I am so glad that I am finally getting answers.
May 17, 2001
Damien had his MRI and EEG done. We are still waiting for the results. During the EEG, the technician printed up a page just for Damien to show to everyone. He pulls it out and asks people, “Do you wanna see my brain?” He had four seizures yesterday. He seems so out of it. I cannot wait till we can find out what exactly is going on.
June 6, 2001
I have forgotten how difficult it is to care for Damien all day now that school is out. We finally have a definite diagnosis for him. He has PDDNOS (pervasive developmental disorder non-specific). In English, they don’t really know what the hell is wrong with him. I have been doing quite a bit of research on all of his diagnosis’s and found many similarities with these and Damien’s behavior. I am going to use my next few blogs to relate to everyone my findings in my research.
June 11, 2001
We were told today that Damien has epilepsy. I am to take him to see his neurologist on Thursday at 2:30 p.m. I hope it is not too serious.
June 13, 2001
Every day becomes more and more of a struggle with Damien. I have not been able to get him to sleep until 2 or 3 in the morning for the last four nights. No, I am not letting him stay up that late. I start telling him to go to bed around 9:30 to 10:00. Around 10:30, I have to physically put him in his bed. He still gets up. This goes on for about an hour or sometimes two. We argue until I cannot argue about it any more. I just end up turning off all of the lights and going to bed myself. This is where our second argument begins. He has started wanting to sleep with me again. He has been wetting himself so much, I will not let him. The Desmopression does not seem to work anymore to stop this. When all is quite, Damien tries to sneak in bed with me. He finally told me that he is afraid that the bugs are going to eat him. I told him that we don’t have bugs that eat people; just crickets and a few rollie pollies. I am beginning to fear for him. I am really nervous about where this all is heading. His fears are getting too great for me to even begin to understand. He often screams real loud in a shrill voice like he is being hurt badly. I feel the neighbors are beginning to think there is abuse in the home. Some have actually made comments. I wish there were more I could do for him. I am living my life on my last nerve. I am never going to give up on Damien. I just wish I could get him to help me understand. “I love you, Damien!”
June 14, 2001
Today was the big appointment at the neurologist. We haven’t found anything out, but that he definitely does have epilepsy. He has been put on Tegratol and I had to buy him one of those medical alert necklaces. The neurologist did say that it was a problem, from what he can tell, from birth. He said that the neurons in his brain are like a computer that has been wired wrong. I am kind of sickened, however, that it has taken so long for the test results to come in.
The neurologist told me that the reason Damien has regressed and started forgetting things is due to each and every seizure causes damage to the brain. He said that Damien is consistently in seizure mode while he is sleeping. The neurologist seems to believe this is why Damien is wetting the bed every night. He said that since Damien wets himself each time he has a seizure, that is most likely what is going on. I just pray the medication helps.
Though the journal entries are from years ago, seizures had been persistent throughout Damien’s life. We say that we have been seizure free since Damien was 12, but we cannot be certain if that is the case. What I can say is that Damien has been on seizure medication to help with his headaches and mood swings, so it is quite possible that the seizure disorder is still there. It is possible that the medication is just preventing the seizures. Whatever the case, I can say, for sure, that I am glad he is progressing, and the seizures are not preventing him from doing so.