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Michael's Story

Michael
quote from Michael's mom

This is a transcript of a video from the Growing Up with Epilepsy Web site. For more information visit http://www2.massgeneral.org/childhoodepilepsy.

Brian: Okay, you ready? Let's go mow.

Michael: Okay.

Brian: What are we going to do outside?

Michael: Cut.

Brian: Cut what?

Michael: Lawn?

Brian: We're going to cut the lawn?

Michael: Help.

Brian: You're going to help me?

Brian: Our son Michael is four years old. He's a happy, fun-loving, precocious little guy, loves the outdoors, loves to help mow the lawn when he gets a chance. We're very happy and proud of him, especially where he is today versus where he was a couple of years ago when he really was at the peak of his seizure disorder.

Maureen: When Michael was about five and a half months of age, we started to notice him, when he would wake up in the morning and after naps, he would do something strange where he would drop his head and kind of tilt it to one side and his eyes would go off to the right side. I don't know why I thought seizures, but I just had this sick feeling that there was something wrong. I got on the Internet and I typed in "baby seizures," and what came up was infantile spasm/West syndrome.

Elizabeth Thiele: Because his parents had quickly noticed that these movements were not normal, Michael had an EEG, which confirmed that he was having seizures and let us diagnose him with infantile spasms.

Brian: Our world changed dramatically at that time.

Maureen: I just couldn't imagine that this child that looked so perfect and seemed so perfect could possibly have something like that.

Thiele: Infantile spasms are a type of seizure, and they're an epilepsy syndrome that has onset in babies, infants, typically between five months of age and a year of age. If babies do develop this type of seizure, they are at significant risk for subsequent mental retardation and significant learning problems. Because of that, it's very important to diagnose this type of seizure as early as possible and start treatment and get control of the seizures as quickly as possible.

Brian: Dr. Thiele did not even want to delay us a day or two. It was critical to his long-term well-being.

Thiele: We felt it was in his best interest for his best outcome to not only effectively treat his seizures, but to closely monitor his development and allow the early intervention therapists to provide him any therapies he might need.

Michael: Mama turn.

Maureen: We started early intervention right after we got the diagnosis.

Michael: Cat.

Maureen: Cat.

Maureen: At six months of age, we started with occupational therapy, and at eight months of age we added speech therapy.

Michael: Apple.

Maureen: Apple.

Michael: Me turn.

Amy Morgan: Early intervention is important because from the ages of zero to three, the brain is the most malleable and available to rewire or make alternate connections that are necessary because seizures have disrupted normal development.

Brian: We really believe that the home visits that Michael received throughout the time that he was having seizures did help him to maintain certain skill sets and even advance.

Brian: Turn the page. Who's that?

Michael: The el...

Brian: The elephant-- yeah. What's he reading?

Michael: Puh...

Brian: Paper.

Michael: Paper.

Brian: He would plateau for quite a while, but he would never truly regress, despite having 30 to 40, sometimes as many as 50 seizures a day.

Brian: Okay, are you okay?

Maureen: We had tried around eight medications, and nothing really worked until our ninth medication, and from that point it took us about four to six months to get seizure control. It was an awakening. And then we went into preschool.

Brian: Developmentally, Michael, from a gross motor standpoint, is still a little bit behind, but he's caught up quite a bit. His fine motor skills have increased dramatically, and I'd say they're approaching his peers.

Teacher: Good job, good job.

Morgan: We started seeing Michael when he was a year and a half, and he was having difficulties with expressive language and attention primarily, and both of these difficulties were affecting his ability to learn appropriately.

Patricia Parker: What song do you want to sing?

Brian: He understands a lot of what you say to him.

Parker: You want to sing "We Go Traveling By" for the parents?

Michael: No.

Parker: No?

Brian: Verbal speech, or expressive speech, that is probably his biggest delay and has been throughout this entire process.

Parker: How about the bus?

Michael: Yeah.

Parker: Yeah?

Morgan: Approximately half of the children who have epilepsy will have some sort of learning difficulty, from very mild to perhaps severe. The most common difficulties would be attention, language and memory. Speech delays are common, and in Michael's case this was one of his big difficulties.

Brian: We've tried to work closely with the medical side as well as with his educational team to help everybody understand his overall needs and what the goals are for Michael.

Teacher: If he gives you one word, you do two. If he gives you two, you do three.

Maureen: For example, if he were to say "more," I would then say "more cookies"?

Teacher: You know he can say "more cookies." You might say, "More what?"

Maureen: Okay.

Brian: Being able to have everybody on the same page working harmoniously for the better outcome of our child has really impacted his ability to move forward.

Parker: Our whole team has really helped Michael come such a long way, because we're able to go from the same starting point in every area that he's in and compare notes and then take it one step further.

Suzanne Thistle: What's that?

Michael: Milk.

Thistle: Milk. What do you do to milk?

Michael: Drink.

Brian: One of the things the neuropsych evaluation helped to define was to structure a tutorial, which is a one-on-one, that takes place between Michael and one of his speech therapists to help him communicate better in an expressive manner.

Thistle: And who has the bread?

Michael: Me.

Thistle: Say "I have bread."

Michael: I... bread.

Thistle: I have...

Michael: I have... bread.

Thistle: Good job.

Gretchen Timmel: One goal is to help Michael learn how to focus and how to observe and take in information and then apply it. And so the goal of the tutorial is to set up that kind of an environment that's conducive to learning those skills. We want him to learn how it is that you communicate verbally with other people.

Michael: More, please.

Thistle: Oh, "more, please"--yes, I would love some more.

Thistle: Expressively, Michael has come a long way. When I first met him about a year ago, he was doing a lot of nonsense words, a lot of approximations, a lot of pointing. Now he's able to come up to a couple of words at a time, which is fantastic. We worked on certain categories with things at his house: foods, things that he wears, things in his classroom. Because that's his environment.

Brian: We go in and we talk with his therapist so there's some symmetry between what's being taught at school and what's being taught at home.

Maureen: Which one, the blue one?

Maureen: Recently we've been working a lot on longer sentences. If he wants something, a lot of times he only says the single word.

Michael: Yep.

Maureen: How do you use your sentences?

Michael: Yep.

Maureen: What about this? Michael?

Michael: I... wa... zip... me.

Maureen: Excellent.

Maureen: You can see the wheels turning, but he is unable to express it.

Maureen: So we can go outside.

Maureen: If you just give him time-- you know, wait time, you're able to get the result.

Brian: Watch the ball. That's a good one.

Maureen: That was up high.

Brian: That was up high.

Brian: Recently he's found a new love for golf. He really enjoys it, and his ability on the hand-eye coordination and to swing through and line everything up for us is just very exciting, because we never thought the would get to a point this quick.

Brian: Good hit!

Maureen: We still have struggles, but he just shows us every day that he's willing to put up the fight to learn.

Michael: On the tee.

Brian: Yep, it's on the tee. Let's see a big hit.

Michael: Off, tee?

Brian: Hit it off the tee, yeah.

Maureen: How could we not just be just so proud of that?

Brian and Maureen: Whoa!

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