Guest Author: Laurel Joss, M.A, EcEd, RDI® Program Certified Consultant   

Part 2: The Tests.

EEG (electroencephalogram)

An EEG is a procedure in which small metal discs are glued to one’s head in order to detect electrical activity in the brain. Some EEG’s are 24-hours, with or without video monitoring for the full amount of time. These may be done in the hospital, or on an out-patient basis with the equipment attached at a medical facility and brought home by the patient for the duration of the test. Sometimes your doctor might order a sleep-deprived EEG, in which you will be asked to keep your child awake for most of the night prior to the test. These EEG’s are shorter in duration, generally about an hour. The results of an EEG will show obvious seizure activity, but some focal seizures are deep within the brain, and are not picked up by an EEG. This was the case with my son. When his EEG came back clear, but he showed regression over the following months, we decided to have a brain SPECT.

Brain SPECT (Single Photon Emission Computed Tomography)

A SPECT scan shows how the blood flows through the arteries and veins in the brain. Your doctor can see which areas of the brain are getting less blood flow, which helps to pinpoint the exact spot in the brain where seizure activity is occurring. This test can detect seizure activity deep inside the brain that an EEG can miss. To prepare for the scan, your child will be injected with a radiolabled chemical which emits gamma rays that can be detected by the scanner. The computer can detect these rays and use them to create two-dimensional cross-section images of the brain, which can then be added back together to form a three-dimensional image. The chemical takes approximately 20 minutes to reach the patient’s brain. Once this occurs, the patient lays down on a table while the scanner rotates around his head. It is important that the patient remain as still as possible, even avoiding facial movements. Many children will require anesthesia in order to remain as still as possible.  

Which test is right for your child? Most doctors will start with an EEG.  My son had his first EEG shortly after his autism diagnosis, at the age of three. A neuropsychologist whom I was working with at the time noticed some spikes on his EEG results. I took them to a neurologist who was covered by our insurance, and he told me that my son was not having seizures. He did not take any medication for seizures until he had a noticeable petit mal seizure at school four years later. Was the first doctor mistaken? I don’t know, but I often wonder how things might have been different if I’d pushed for a second opinion back when my son was three years old. I have also heard that some neurologists will disregard a few spikes on an EEG if they know that the patient is diagnosed with autism, so it is important to find a doctor who specializes in epilepsy and has experience with patients who are on the autism spectrum.  

We chose to follow through with the brain SPECT after my son’s EEG came back clear, yet he was showing regression in his RDI® program, along with other disturbing symptoms. Not only did the brain SPECT show seizure activity, it also allowed his doctor to pinpoint which areas of his brain are under-active, and which are over-active, and he put him on a different medication that met his needs much more effectively than the last seizure medication he was on. Knowing which areas of his brain are affected has also helped me and my RDI® consultant choose appropriate objective to work on. We are proactively working on stimulating the areas of his brain that really need it.

Even if your child has never exhibited a noticeable seizure, it is still possible that there is seizure activity that could be impeding progress.  For a full list of symptoms, visit www.epilepsyfoundation.org.

Part 3: The Treatment.

The results of my son’s brain SPECT showed focal seizures deep in the center of his brain. These seizures were so deep that an EEG test did not pick them up. His doctor prescribed Depakote, and anti-seizure medication. We did a baseline blood test prior to starting the Depakote. These tests are run approximately every three months, to monitor the amount of Depakote in his system and to make sure that it is within a healthy and therapeutic range. We also started at a very low dose, and gradually built it up to his current level. We saw his doctor every two weeks as we gradually increased the dosage.

When he first started taking the medicine, I noticed that he became a bit more emotional and less regulated. With every dosage increase, there was a period of regression, which generally presented as increased rigidity and emotional dysregulation. He has always had a habit of obsessing over certain toys or objects, though he would occasionally change the focus of these obsessions. This had been a constant source of stress to me as I worked on his RDI® goals. I nicknamed his obsessive interests “The Nine-Headed Hydra”, after the mythical creature with nine heads that could not be killed, because every time you chop a head off a new one grows back in its place. That’s what my son’s obsessive interests felt like to me. I would redirect him away from him Thomas set, only to have him shift his focus to the Mickey Mouse Clubhouse. I was exhausted.  

Once we started on the medication, I noticed a pronounced increase in this obsessive behavior with each dosage increase. This would last for approximately three days, after which it would improve. For example, he had been taking Depakote for about two months, and we were still gradually increasing the dosage every couple of weeks. During this time, his aunt and uncle gave him an animated Mickey Mouse Christmas Decoration they stored in their basement. He was completely obsessed with this Mickey Mouse. This obsession went beyond most of the obsessive interests that I had dealt with prior to the medication. He carried this thing with him everywhere he went in the house, he put it next to his bed at night and I had to threaten to take it away because he would not go to sleep because he was talking to it.  Luckily, this only lasted a few days and while he still likes Mickey Mouse it is no longer the object of his intense obsession.  

Once we found the optimal dose, there were many positive changes. The obsessive interests diminished greatly. His eye gaze improved dramatically, and he started reading and using facial expressions in a natural fashion. He started sharing information about his day at school, and asking me questions about my day. His teacher and other adults noticed the increase in sociability as well. 

As he grows, we continue to see his doctor regularly and to monitor his medication. One of the side effects is that he is hungrier than he used to be. This, combined with the onset of puberty, has led to some weight gain so I am careful to monitor what he eats and to make sure that he is getting some exercise. I also keep a close eye on him for regressions. At one point, we noticed that his ability to use facial expressions had decreased so we increased his medication and it returned. I don’t know if he will require medication for the rest of his life, but I do know that for now it has allowed him to learn and to connect and we are now focusing on getting his RDI® program back on track. He still had the initial building blocks of co-regulation and coordination in place so it was mostly a matter of filling in the nonverbal communication pieces, after which collaboration came easily.  

Click here to read Part 1: Our Story of the Autism and Seizures series.

Laurel Joss is an RDI® Program Certified Consultant in Chicago Ridge, Illinois. She has a master’s degree in early childhood education. She has two children, one of whom is on the autism spectrum and has been using RDI® strategies for the past seven years. Visit her blog at remediatingautism.blogspot.com. Part 4 in this series coming soon!