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Hi I'm new...and I have some questions...
Wed, 06/20/2007 - 23:53Topic: Parents & Caregivers
Hi all,
I am so happy that I have found this board. My ds just turned 2 in May 2007 and began having seizures in Feb.2007 as a result of a virus. He also has been diagnosed with Developmental delays and PDD-NOS. He is currently non-verbal. The doctors have decided that they are not febrile because he has had epsiodes without being sick.
He is currently taking Keppra (1200 mls a day) and Topamax (200mgs a day). In April he was sleeping a lot and we cut back on the Keppra and he seemed to be doing better. Unfortuantley he came down with strep a few days after we were seeing a difference and had some seizures which landed him back in the hospital for a week and they upped his med levels.
My concern is that currently he is not interested in doing anything but walking around, playing in his ball pit or bumping into the furniture and sucking on his binky. Before he started taking the meds he would initate some play with toys and now he doesn't want to do anything with them. He also seems to be zoning out more than he used too. I was wondering if this could be a result of the medication levels either being too high or too low for him. Could he just not be feeling right and not have the energy to want to play?
Thank you in advance for you support and advice. I am looking forward to talking with all of you.
Comments
Re: Re: Hi I'm new...and I have some questions...
Submitted by Paws1129 on Thu, 2007-06-21 - 00:47
Hi Emily,
Thanks for the response. When he was hosptialized in May we talked about changing meds and one of the neuro's said that he wasn't ready to give up on the Keppra yet but we do have other possiblities for him. Anyway, he has an appointment with his neuro next Friday and I plan on talking about this at great length. I also want to video tape him and show her what he is like. I think it has something to do with the meds and so does all of his therapists especially the ones who knew him before he got sick in Feb. Because it comes and goes. For example one day he can hold his cup and drink (a skill that he has had since he was 9 months old) and other days he can barely pick it up. His neuro isn't a Epilepsy Specialist but the head of the practice is and he has reviewed ds's case and has seen him when he was in the hospital.
Take care,
Paws
Re: Re: Hi I'm new...and I have some questions...
Submitted by Paws1129 on Fri, 2007-06-22 - 23:43
The head of the neuro group is an Epliepsy Specialist and he has seen him in the hosptial. His regular neuro isn't the specialist but the head neuro oversees many of the cases.
I have mentioned it and we cut back on the Keppra once and it was working and then he got sick and they upped his meds to more than he was taking before. He has an appointment next week and I am hoping to discuss it further then.
Take care,
Paws
Re: Hi I'm new...and I have some questions...
Submitted by kaitlynsmom on Thu, 2007-06-21 - 00:25
Hello! My daugther turned 2 in May as well and she was diagnosed in March. So far she has been developing at a normal rate. She developed seizures from an unknown cause so far and we aren't even really sure as to when they started. We started her on Keppra and she began having alot of behavior problems as well as not being interested in anything that she was before the Keppra. Before we had started the Keppra she was potty trained and would play on her own and with others, after the Keppra she is no longer potty trained and has a hard time playing for any time at all. We stopped the Keppra this past Sunday and just in the few days of being off of it I have seen a world of difference in her. I don't know if it's the same with your son but I think that Keppra had a lot to do with how my daugther was. It is possible that he doesn't feel good, because we have experienced that alot before we started her on medication but I know that the Keppra didn't help the situation at all. Have you mentioned it to his neuro? And is he seeing an Epilepsy Specialist? Take care! Emily