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My three year old son was diagnosed in October of 2006. I always sensed that something was wrong, but I had no idea that it would point to epilepsy. He has absence and myoclonic seizures. In the beginning he was having 60 plus seizures a day. He was first on the phenobarbital, then carbamezapine but those only seemed to make the seizures worse. He was later started on Topamax. In the beginning he seemed to be doing well, having 5-10 seizures a day. That didn't seem to last long. Though we did see a lot of change. He seemed to be more aware of his surroundings. He began walking more steady and actually running. I was so happy. He is now taking Lamictal, Depakote, and the Topamax. He is still about 15-25 seizures a day. He has a speech delay, though since he began the Lamictal he is making small noises and some babbling sounds. it is so hard to communicate with. He also has trouble feeding himself and often forgets how to. His strongest area is gross motor. He has tantrums, some biting, smacking his head, mostly when he gets frustrated. Lately he tries to hit others when he is upset. His nuerologist wants to look into the Ketegenic Diet. I just don't know how well he would do. He barely eats now, he often hates textures of foods. Tolerating it one day, then hating it the next. So I'm not sure how well he'll handle it. I'm not even sure if thats the best route for us, but then again how do I decide? How do I know what to do. Any advice?
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lLAMICTAL DOES ALLOW YOU TO THINK CLEARLY SO THAT WOULD EXPLAIN THE ABLIITY TO START MAKING BABLING SOUNDS NOW. HE ISNT ALL DOPED UP ANY MORE. I FOUND THAT EVEN WITH MYSELF, I WAS IN A DOPEY HAZE UNTIL I WAS SWITCHED TO LAMICTAL. AS FOR THE KETGENIC DIET, I HAVE READ A LOT ON IT. THEY HAVE HAD GREAT RESULTS WITH CHILDREN ON IT. THERE IS SOME INFO ON THIS WEBSITE ABOUT IT AND I HIGHLY RECOMMEND YOU READING IT. ONE THING YOU CAN FEED HIM THAT IS SOFT WOULD BE SCRAMBLED EGGS, WHICH YOU CAN SERVE PLAIN ONE TIME OR MIX FINELY SHREDDED CHEDDAR IN THE RAW EGG AND THEN SCRAMMBLE ANOTHER TIME FOR A DIFFERENT TASTE. THERE IS ALSO DIFFERENT LOW CARB PRODUCTS ON THE MARKET BUT YOU WOULD NEED TO TALK TO THE DOCTOR IF THEY WOULD BE OK ON THE CHILDS DIET, LIKE THE LOW CARB ICE CREAM OR FOR A DRINK, LOW CARB CHOCOLATE SLIM FAST WHICH IS PACKED FULL OF VITAMINS. I AM DOING THE ADULT VERSION WHICH IS THE MODIFIED ATKINS, BETEN MY MEDS, VNS I AM WAY DOWN ON SEIZURES BUT STILL HAVING THE OCCAIONAL T/C AND LOTS OF SIMPLE COMPLEX SO AM TRYING TO GET RID OF THOSE. GOOD LUCK AND I PRAY EVERYTHING IMPROVES SOON FOR YOUR SON.
I TYPE IN CAPS FOR VISUALLY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
Get someone to train him in sign language and take classes too
so you can understand him. Since his speech doesn't work and he
can't ask for what he wants it's perfectly natural for him to be
frustrated.
Sign language helped me learn to talk and one day
you'll wish he'd shut up. From what you said It's the same thing
I have. Mouth movements are indicative if temporal lobe seizures.
He'll marry some girl and you'll wonder why you ever worried. I
beat the odds and he can as well but you are going to have to fight for
him until he is old enough to fight for himself. You have to
believe in hope and pray for courage to get you through the night.
Thank you so much. He is currently seeing a speech therapist. He is still having so many clusters of seizures at one time. You are correct when saying that it sounded left temporal. There are some days he doesn't remember how to eat with his hands. Though I never give up trying hand over hand. We are already trying to sign, though at this time he isn't picking it up and isn't comprehending. Though I believe it will get better, atleast I pray everyday it will. He'll always have me fighting for him and what he needs. Thanks!
If he struggles with sign language for communication, there are pic syms too. I work with severely delayed students who have a lot of physical disibilities. We use pic syms in our building because a lot of our students have no verbal communication skills. They symbols are great, they have the word right under them, so it's easy for the person he is trying to communicate with. You might want to look into that too. Sometimes that can open up doors to verbal skills also. I've talked with our Language Specialists A LOT. I truly believe all of the students in our building can communicate somehow. Let me know if you're interested and can't find them, I'll look or check with a Specialist for you! Maybe when his seizures get under control, communication won't be such a big problem for him, they can cause problems for communication sometimes.
david59 orien , what wonderful words!