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mcnamara1989

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Hi. My name is Laura and my son's name is Dylan. He will be 5 in a couple of weeks and he was diagnosed with epilepsy at 3 weeks old. Dylan is completely behind in his motor skills. He doesn't walk or talk. He needs total care for everything. He is on 2 different meds and he had brain surgery to try to remove the most of his seizure activity. His seizures are controlled very well but he has seizure activity every day. He does what I call chattering. His teeth will chatter like they would do when you're really cold. This can last from a few minutes to an hour and he sometimes does this 2 or 3 times a day. He also is biting his nails and he bites his arm. Has anyone else had any experiences like this? Also, we are considering moving from NJ to Houston. If anyone lives there could you possibly offer some advice on neighborhoods, schools, etc.? Thank you so much for your help!!
 
Hi Laura, welcome here.

Just like your boy my eldest son doesn't talk, can't walk and needs to be 100% cared for by other people. And like your boy he does bite his own hand (very hard.) He doesn't chatter but sometimes he grins his teeth (on purpose.) His motor skills are very basic and cognitive he functions like a 2-year old. He has a wheelchair, special needs chair, bed etcetera and goes to a special needs daycare instead of school. Seems tough when I write this down but let's say we got used to it and over all he is a happy, lovely child, an enrichment to our family.
My son has braindamage caused by hypoglycemia two days after he was born. Between age 1,5 and 3 he developed a bad epilepsy syndrome caled Lennox Gastaut syndrome, which caused many different types of seizures each day. Wé've tried many AEDs but they didn't help him at all. When he was 5 we started him on the ketogenic diet and since then his seizures are pretty well controlled most of the time. But he still has epileptic activity in his brain, allthought his EEG has improved over 70%. Now and then he still has periods with seizures but significantly less than before the ketogenic diet.
 
Laura,

Welcome!

I don't have much advice to share on your son's seizures or on Houston schools, but I did want to say "hi." The people here are great, and there are lots of moms here. :)
 
Thank you

Thank you for your reply. Dylan is really happy, too and he has his favorite things to do. I am going to try to find a good school for him or a medical daycare if there are some when we move. It helps to talk to other parents and see how they're coping. It helps to keep me positive and I hope it does for others as well. I'm glad your son is doing better on the ketogenic diet. That is really good to hear. I wish the best for him! Thank you again for your input, it helps alot. Good luck to you!

Laura
:e:
 
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