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3 month old with seizures

Wed, 01/17/2007 - 16:01
I am new to the website and have really learned a lot in just a few days. My daughter is 3 months old and was recently diagnoised with a seizure disorder. She has been having 8-15 grand mal seizures a day. We are currently on Phenobarb and Keppra. We are currently in the process of scheduling an appointment with an Epileptologist. She is so young that some of the new medication has not been approved for infants her age. Keppra is one of those drugs, but they have found that it works great in older kids. The past 2 weeks have been constant seizures throughout the day. The past few days she has had only facial twitches. Does this mean the medication is working, but need to adjust it to get those to stop? She is also really tired and not wanting to eat. I have also found that her diaper in the morning is hardly wet ( I expect for it to be soaked after 8-10 hours), is this normal? So many questions to answer? Praying daily for her and other families because this is so scary. JBishop

Comments

Re: Re: Re: Re: Re: Re: 3 month old with seizures

Submitted by Baby Sam on Sun, 2007-08-19 - 14:41
The doctors do not know why Sam is having the seizures. I have been told that sometimes not knowing why he is having the seizures is the best diagnosis for Sam.....it doesn't make any sense to me but 2 different neurologists told us the same thing. They performed detailed genetic blood testing and metabolic blood tests. My husband and I had our blood drawn as well. Nothing came back abnormal. He had an MRI which was also normal. The only diagnosis that he has are the myoclonic seizures. We are going to a new ped. epileptologist in Boston next month for a second opinion. We are going to start a new medication tomorrow so we are keeping our fingers crossed. Birth to 3 has really helped us. I hope that you can find some answers soon, the hardest part of it all is not knowing. We are still trying to figure it all out. Best wishes.

Re: Re: Re: Re: Re: Re: Re: 3 month old with seizures

Submitted by JBishop on Wed, 2007-08-22 - 23:43
We were also told that it was good that we didn't know where it was coming from. We did blood work and MRI's and they were all clear. I feel that birth to 3 is a great program. My daughter attended OT for about 2 months and it did wonders!

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