Rohan

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archana

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Hi, we are parents of 3 1/2 yr old Rohan. He was diagnosed with complex partial seizures in January. When he gets his attack, he smacks his lips.. like hes tasting something.. It usually lasts for about half a minute. He was also diagnosed with PDD NOS (borderline autism) in april.

For his autism we are doing behavioral therapy, speech and sensory integration programs to which he is responding well.

On the epilepsy front, we are still trying out different medications. Currently he is on Oleptal DT (Oxcarbazepine) 150 mg, 1.5 tablets in the morning and 2 tablets at night. Also he takes Torleva syrup (Levetiracetam) 3 ml morning and 3 ml at night Torleva has been recently introduced since roughly last week of June. Prior to that he was on Oleptal along with 2.5 mg of Frisium at night.

Ever since we have started phasing out frisium, his seizures have increased ( 5 in the last 30 days). Now, whether this is due to frisium or adding Torleva i dont know.

He had another attack this evening and our neurologist has suggested we add frisium back again.

The seizures i feel takes away all the good that the therapy is doin. its like days are getting lost with his attacks. We need to control the seizures and are very uneasy about it. Any help will be greatly appreciated.

Archana and Sarosh
Mumbai, India
 
Hi Archana and Sarosh, welcome to the forum. :hello:

There are a lot of options available to you to help Rohan. Have a look through the epilepsy 101 threads for ideas.

The forum also has quite a bit of crossover with autism subjects/discussions. You can use the search function at the top of the page to find them.

Make yourself at home here. :)
 
Hello, and welcome

to CWE! It's nice to "meet" you!

I, too, have E, and am the parent of a child (well, he just graduated high school here) with PDD NOS. So, I understand your frustration.

http://www.coping-with-epilepsy.com/forums/f23/autisum-gaba-vitamin-b6-seizures-2746/


http://www.coping-with-epilepsy.com/forums/f22/neurofeedback-autism-3073/


Check out these 2 links, as well as the epilepsy 101 thread link that Bernard gave you. They should all yield some valuable information for you.

Neurofeedback, in the 2d link, is something that RobinN is quite interested in and is using for her daughter's seizures with great success.......but read the link, I think you'll find it interesting.

Stick around. I think you'll like it here. Feel free to vent, or whatever. We'll be here for you!

Meetz:banana::banana:
 
Hi Archana! Welcome to CWE. :) I'm sorry to hear about the problems Rohan is having. Check out the epilepsy 101 link that Bernard posted, as well as the links that Meetz provided. Also, there's some info on Anti Epilepsy Drugs and their long term effects on cognition. Feel free to ask questions, vent, or chime in.
 
Hi Meetz.. thank you for such a prompt reply. I went through all the links provided by you and bernard. Wow!! theres so much information on here!!! My question to you is actually about your son... how is he doin? We are a bit apprenhensive about rohans future. I mean, i just want to know how does your child deal with the pdd at his age? Do things get better. Is he independent? You say hes graduated from high school? thats a big achievement isn't it? He is high funtioning too im presuming... id love to know more about him just so we have an idea about rohans future...
archana.
 
Hi again archana!

Andrew is high functioning, yes. He has a few comprehension issues, which are of concern to me. Whether or not those are because he is a TEENAGE BOY right now, remains to be seen, but he has had comprehension issues his entire life, so I don't think so.

Andrew has had his own checking and savings account for a couple of years now, and just last week got his drivers license. I made him wait because he had a bit of a temper......he's over being mad at me for that now. He actually took physics and pre-calculus his senior year in high school, something nearly unheard of, for the special education students. Granted, he got D's in them, but it was the experience of having taken them that he felt was important. And, I guess he was right. The transition teachers were certainly impressed. All of us, his teachers, and his parents, thought he was nuts......

He's actually enrolled at the local community college for the fall, part-time, in Business Management.:bigsmile:

I have had to do A LOT of hands on work with him in terms of his schoolwork. (My best friend helped, too, she was his tutor for years). The ONLY classes I did not help him with (lack of knowledge on my part) were the physics and pre-calculus. His father, sister and brother all stepped in there. Actually, I home-schooled him for a year-and-half to bring his reading up to par...........I pulled him out of school at the end of 4th grade here, and didn't re-enter him until the middle of 6th grade. When I pulled him, he was barely reading at the 2d grade reading level. When he re-entered, he was well into the 7th grade reading level, with collegiate level spelling abilities.:bigsmile::roflmao::noevil:

Andrew has had many other health issues, too, which have had an impact on his life. He is nearly deaf in both ears (70% in one, 90% in the other) and this sometimes fuels his anger, too. He also has eye problems (night vision and peripheral vision issues); his asthma has disappeared, as has the hole in his heart and other problems. HOWEVER, he HAS HAD 14 surgeries, with a few more to come.

This past week, I got him to sit down with my insurance agent, and sign up for a long term plan to start putting money away for HIS OWN retirement. While he doesn't quite understand the total idea, he understood enough of it, AND he understood when I told him that Dad and I won't be around forever to take care of him. He will ask me and my best friend more questions about it to be comfortable with it. He knows that we wouldn't do something to misdirect him. The agent also asked him to consider something else, so he's asking questions now, to understand, so we'll go from there.

Andrew is NOT out on his own yet, but that is something that we discussed this week. He knows what he would need to pay in terms of bills when he would move out, and he understands basics like groceries. He still screws up on laundry and dishes in the dishwasher. I can't get through to him on those things yet. But, he works at a minimum wage job for his dad. He's talking about getting a 2d job, but that's up in the air with school. We're talking about it, the pros and cons.......what it would be like with school, his procrastination issues, etc, etc.

He's doing remarkably well, I think, all things considered. But, and this is NO JOKE, it has been A LOT OF WORK. PDD NOS kids are hands on kids. They keep you on your toes. But, they are sooooooo worth it. And YES, there IS hope. You just have to keep plugging away. DAY AFTER DAY AFTER DAY AFTER DAY.......

I will be back on later, but I have to get going now.......I hope this helps you some.

Take care,

Meetz:rock:

PS.......oh yes, and then there is the "girl friend" thing.....and "relationships" OYYY
 
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