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Henry's Story

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

Tony: Come on, hurry--keep going, keep going.

Tony: Henry is a very happy boy, always very happy. He's six and a half years old. Right now we ask him how old is he, he can use in Chinese--(speaking Chinese). That means "six years old." We teach him. And he learned that.

(Henry laughing )

Tony: You like that?

Naili: Henry was diagnosed with Angelman syndrome when he was four and a half years old.

Elizabeth Thiele: Angelman syndrome is a genetic disorder that results from a deletion or methylation defect of the DNA, a change in the DNA, on chromosome 15.

Tony: Push, push.

Thiele: Of children with Angelman syndrome, most of them are completely nonverbal. Most of them have significant unsteadiness, or ataxia, and most of them have very happy demeanors or personalities. And most of them also have epilepsy. Children can have epilepsy for many different reasons, either the result of trauma, the result of infection. We're learning more and more with time that many children have epilepsy as a result of a genetic change or a change in their DNA.

Tony: Henry has the first seizure at four and a half years old. He has the first grand mal seizure at that time, result in hospitalization.

Thiele: After that, he was started on medication, but continued to have smaller seizures, which is typical of children with Angelman syndrome.

Naili: The second seizure was also end up in the hospital. It seemed to be more difficult to control than the first one.

Naili: Yeah, good boy.

Thiele: Following that, his medications were adjusted, and fortunately, his seizures now are very well controlled.

Tony: Controlling seizure is very important and challenge for the family.

Tony: Here, Henry!

Naili: Henry, look!

Thiele: Children with Angelman have very difficult-to-control seizures in younger childhood. And then as they grow older, the seizures become easier to control and less of a problem. That's not always true, but hopefully Henry's will stay controlled.

Naili: The success of this special child is very much depending upon the people around him.

Thiele: Treating a child with epilepsy is really a team approach. We think not just about treating the child's seizures, but treating the whole child. Having epilepsy can affect how that child interacts and learns and functions in their world. And we view all of those things as aspects of that child's epilepsy.

Naili: Put it in, Henry.

Naili: We like Henry's program very much because they have very comprehensive approach. And they are not only treat the seizure, they also care about the other behavior problem related to seizures.

Instructor: Off we go.

Naili: And learning ability related to seizures, the medication related to the behavior problems. This is very helpful for Henry.

Instructor: What's your name?

(Henry vocalizing)

Instructor: Very good! Your name's Henry. Henry, that's you. Good job.

Thiele: We did have Henry see Amy, our neuropsychologist, who was able to get a pretty good idea of what his cognitive strengths and weaknesses were and help formulate his school program.

Amy Morgan: The goal for any child is to help them achieve their potential. And we really don't know what that is. In Henry's case, because he has Angelman syndrome, we believe it might be limited. But we don't let that limit the sorts of interventions we would recommend for him, as appropriate for his developmental level.

Instructor: One, two, three. Good job. Can you stick on the apple?

Morgan: So, the philosophy is to treat the whole child and, in his case, to foster the development of language and help him acquire more vocabulary words.

Instructor: Try again.

Henry: All done.

Instructor: Are you all done? Henry, look. Are you all done?

(Henry vocalizes)

Tony: In school, teacher teach him how to say "all done." So when he come home, every time we feed him, if he feel it's enough, he will say, "All done, all done." That's the word he using. So we really appreciate the teacher teaching him how to say "all done."

Morgan: With someone like Henry, help him sustain his attention for even slightly longer periods of time, so he's more available to learning. He can attend to things in the environment and more actively and meaningfully explore and learn from what's happening in his environment.

Instructor: There you are! Ah, there you are, Henry. Henry, where are you? Henry!

Naili: Dr. Morgan made a great recommendation for school, like behavior control using ABA method, and also physical therapy, occupational therapy, speech therapy, all work together to improve Henry's cognitive ability.

Instructor: Oh, who's here to see you?

Tony: Also, he can call me daddy, so I'm happy to see my son call me daddy.

Thiele: Many children with Angelman syndrome also have significant difficulty with behavior, and that can dramatically impact their ability to learn, their ability to focus, their ability to interact with their families.

Naili: Let's go home, huh, Henry?

Tony: If I know Henry's having some behavioral problem and then we get consultation from the psychiatrist.

Nicole Danforth: When I first met Henry, he was brought in by his parents with a very specific concern, and this is a concern that's quite common to children and families with Angelman syndrome, and that is actually hyperactivity. We started with, you know, what kinds of things could we do behaviorally? You know, but mom and dad were actually right on and were trying a lot of different things. There is a program called Applied Behavior Analysis, which often is done in schools, and we are big fans of the ABA-type programs. And Henry was already involved in that and was in a special program, and his parents were doing things that healthy parents do, which is setting firm limits, being consistent and themselves staying quite calm. In some senses, Henry and his parents had already sort of done the first step. And so what we decided to do was to consider a medication for Henry. We were fortunate that he responded quite well to a medicine.

Tony: We found Henry has pretty much change after we start all the medication and all the therapy.

Naili: He become more alert and more aware what is going on around him. And also, like to learn, to interreact with people and speak some words, and which is very encourage us. We are very excited about it. And he also started mimic the people's talking, people's behavior. I think this is all important, is part of his learning development.

Naili: Go to sleep, go to sleep.

Naili: The best wish we have for Henry is we hope he have a quality of life as close to a typical person as possible. To achieve this goal, Henry have to learn a lot of things at this younger age. As a parent, what we can do is create as many possibility as possible for Henry and let him grow and achieve the best he can be.

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