Sensory Defensiveness Disorder with Epilepsy?

Kristen Dawn - posted on 01/03/2013 ( 1 mom has responded )

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My four year old son has been diagnosed with epilepsy since he was 16 mos. This past summer, we began noticing repetitive behaviors and other ticks. I spoke with his neuro and his peds doc. Both referred him out to an OT. We had an eval and he has met a few times with a local OT, but she has referred him out to a more extensive OT. He has been diagnosed with sensory defensiveness disorder. This is new to me. I have researched, but does anyone have any advice on this topic? We start preschool in fall and i want to make the transition easy. He has a hard time making eye contact or adjusting without me. He picks and chooses his "people" yet he is extremely brilliant. At 3, he passed the kindergarten test, his vocabulary is extensive, etc... At times i wonder...

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Julie - posted on 01/29/2013

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I haven't really heard of sensory defensiveness disorder, but I do have experience with epilepsy. Have you seen the articles/research that has come out about the relationship between epilepsy and autism? There was one in the Epilepsy Foundation newsletter within the past year. People with autism have a 25% chance of having seizures. In another study I printed out they found similair pathways were being used for both conditions. Of course, both are also syndrome disorders, so there are a variety of presentations and outcomes depending on the person. Personally, I see a big overlap in "symptoms" of various popular diagnosis that are being given today as a quick fix, instead of professionals taking the time to really investigate and figure out the real issue. There can be co-morbid disorders (cardiac, thyroid, diabetes, are a few that can also have seizures associated with them), learning disorders (twice exceptionality or thrice exceptionality), which when you are really intelligent isn't always noticed because you can cover it up, or sensory issues (hearing and vision issues that don't get picked up). Many of the characteristics of the ADHD child are also characterisitics of an intelligent child who is bored, or of a child who is autistic, etc. . You know your child best and you'll need to advocate for him. I always prep my students by reminding them what is coming up during regular conversation - ex. during the day, dinner, bedtime and it's also on the calendar (though they hardly look at theirs). What is the repetitive behavior - is it a routine that helps him remember something he's supposed to do, or is it something that brings him comfort? Repetitive behavior that helps you remember something shouldn't be discouraged unless it's inappropriate for safety reasons or public/society norms. Otherwise they are learning how to cope with something that's bothering them/frustrating them and that's healthy also, but they also need to learn to talk about it, which at this age they may not be able to recognize and put into words, but can act out (or draw, play, etc.). Being intelligent can be isolating in itself, but having seizures along with it, especially if no one is talking about it with him (but to/at/about him), or asking how he feels about it or encouraging him to advocate for himself, will only make the isolation worse even if over 3 million people in the U.S. have seizures and 50 million worldwide have them. Don't underestimate what an intelligent 4 year old understands and feels. There may be a lot more going on inside than what he's telling you. Intelligent people notice the discepencies and learn quickly that if they speak up about what was wrong, ex. correct people or point out mistakes, injustices, etc., you get yelled at a lot - so it's best not to talk or disrupt the relationships you have with the people that you rely on. Good luck.

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