Forging New Pathways : parenting, medication

Autism and Seizures: Tests and Treatment (Part 2 and 3)

Carlotta Baird — Mon, 05 Apr 2010 15:30:00 GMT

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

Part 2: The Tests.

If you think your child might be suffering from seizures, there are two tests that can help you get a diagnosis. The first is an EEG (electroencephalogram), and the second is the brain SPECT (single photon emission computed tomography).

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!

Autism and Seizures: Part 1 - Our Story

Carlotta Baird — Thu, 18 Feb 2010 15:40:00 GMT

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

I have been an RDI® Consultant for three years and an RDI® parent for seven. I started RDI® back when it was done in an empty room full of beanbag chairs. My son was four years old at the time. He’d been diagnosed with autism a year earlier, and like many mothers of newly-diagnosed children I spent a lot of time on the internet searching for help. Mainstream medicine offered little to children like my son, so I spent a lot of time on autism parent groups networking with other parents. I started hearing about a book called Solving the Relationship Puzzle, by Dr. Steven Gutstein.

I ordered the book and was intrigued. Here was a program that offered more than “social skills”. This program could actually help my son to learn the “why bother” of social interactions, to help him to become intrinsically motivated to form strong relationships with his family and eventually with peers. I was excited when I heard that Dr. Gutstien was coming to my town for a two-day seminar and I registered. His presentation made sense to me and the video clips he played were nothing short of amazing. If I hadn’t seen the “before” clips I never would have believed that some of these children were on the autism spectrum at all. I wanted that for my son.

Luckily, there was a certified consultant in my area so I signed up for her waiting list and began reading more of Dr. Gustein’s books. At that time, there were no parent objectives. There was no online operating system. I cleared a space in my house and filled it with beanbag chairs. I started doing some of the activities in Dr. Gutstein’s book. Eventually our name came up, and we started to work with a consultant.

The program has evolved over the years to its current form, which starts with parent training, then leads into specific child objectives. The early child objectives in Stage One guide parents through re-establishing a co-regulatory relationship with their child. Co-regulation is the dance of social interaction, in which your actions are influenced by, but not controlled by, your partner’s actions and vice-versa. When you are engaged in conversation, you are involved in a co-regulatory exchange. Once simple co-regulation is mastered, parents work on guiding their child in coordinating their actions together. Once this is mastered, you move on to Stage Two, where the foundations of collaboration start.

My son had mastered Stage One, but some of the Stage Two objectives continued to elude us. In Stage Two, there are several objectives on nonverbal communication, specifically, parent and child learn to have simple, back and forth conversations using only facial expressions, gestures, or prosody. My son was able to do so with gestures, but facial expressions were always a challenge for him. It was frustrating to me that he was able to master objectives in higher stages, yet his difficulties with facial communication was always an obstacle. Finally, my consultant suggested that we have him checked for focal seizures.

Focal seizures are abnormal electronic disturbances that remain in a limited area of the brain. They sometimes turn into general seizures, which affect the entire brain. Symptoms vary depending on which part of the brain is affected. They may include abnormal muscle contractions, complex repetitive movements, lip-smacking or chewing and swallowing without cause, forced turning of the eyes, numbness or tingling, and mood changes.

My son had one obvious seizure at school three years ago. He had an EEG, an MRI, he was on Trileptal for a year and he did not have any other obvious seizures during this time. He also remained “stuck” in the same RDI zone. After a year on the meds, his neurologist did a follow-up EEG, which showed up clear, so we took him off the meds. He seemed ok at first, but after a month or two we noticed some disturbing trends:

His ability to read and use facial expressions, which was never great to begin with, completely went away.
He started occasionally eating until he vomited. The first time this happened it was 4th of July, and I thought he’d just eaten too many s’mores. After the third time it happened, I knew there was more to the problem.
His sleep patterns were disturbed. It took him hours to fall asleep, and it was really difficult to wake him up in the morning.

These were just a few of the more obvious things we noticed at this time. My consultant had been working with some other families whose children were suffering from seizures and she suggested that he might still be having problems there. They were seeing a doctor in the northern suburbs of Chicago who specialized in autism and seizures. He did a test called a brain SPECT, where they inject your child with dye and take a full color picture of the brain so they can see what is really going on.

My son’s brain SPECT showed mild seizures in the center part of his brain. They were so mild that they did not show up on an EEG, but they were enough to affect his ability to read and use facial expressions, among other things. We started him on a low dose of Depakote which we gradually increased under our doctor’s supervision. It was not an easy time – we had lots of ups and downs. He would get more impulsive, more obsessive for a few days after each dosage increase but then he would suddenly improve.

At this point, he has improved so much. Last week we were making French toast. As he was cracking the eggs, some of the egg goo got on his fingers. He looked up at me, laughing, and said “Ewww!” It was the “engages in back and forth dialogues using only facial expressions” objective that had all but disappeared! I made a face back and said “Ewww!” He laughed, cracked the second egg, and purposely stuck his fingers in the goo so we could do it again.

I am sharing our story in the hopes that it might help some other families out there who are stuck. I don’t claim to be an expert on seizures and autism yet, though I am certainly on the front lines learning all about it. Today I found out that my younger son, who is not on the spectrum, is almost certainly also having seizures. It hurts a bit, but at least I know where to go for help.

The thing is, we knew that he was having seizures, but our HMO neurologist just did the bare necessary tests and stuck him on a drug that really did not help him. It was only after my consultant referred me to this other doctor, who is of course out of network and therefore out of pocket, but who actually understands the link between autism and seizures, that we finally had some results. So if anybody out there is working with a child who sounds like mine, who is bright and able to do higher stage things, yet can’t seem to get some of the stage 2 basics, this might be a route to check into. However, it is really important to find the right neurologist. My son’s doctor has read EEGs that clearly showed seizure activity, but the doctor dismissed it as “part of autism”. It is so important to find someone who truly understands how the brain works, and who is able to do the brain SPECT, and who will find the right medicine.