Hello my name is Renatta and I am a 27 yr old mother of two children, and I am new to the forum. I have a six year old daughter Yvonne who has been having seizures since the age of four months. She has been on several different types of medications Phenobarbital, Trilepetal, Keppra, Topamax, Depakote, and now she is currently on Trilepetal 900 mg and Lamitical 50 mg. Yvonne's shortest seizure have been at the least 25 minutes. More recently as she has gotten older her seizures has progressed. She started with having them in her sleep, to having partial seizures, to having the staring, now she's having the staring w/drooling, foaming, bubbling out side of mouth, in her sleep, and partial complex seizures that start on the left side of the body and generalizes to the whole body. Last year in 10/2007 she had a continuous two hour long seizures, then in 12/2007 a continuous five hour long seizure, and just recently in 10/2008 she had a continuous eight hour long seizure the doctors in ER had to give her vallium, phenobarbital, trilepetal, and dialatin, and it still took her an additional two hours to come out the seizure. This happened on a Monday and she did not wake up until that Friday. Not to mention my husband had administered 20 mg of the diastat at home. I am very concern because it appears that her seizures are progressing in the increment of 3 hours. The doctors have told my husband and I based on her recent PET scan and EEG that she is a good candidate for surgery. She is scheduled to be admitted in the hospital in 1/2009 for the continuous EEG monitoring and video. The doctors explained they will stop her meds the day before she is admitted into the hospital, and keep her off of them for a week. She will have seizures they will be monitored on the EEG and then will be administered meds through IV to stop them. Well do to her last episode my husband and I decided to have a do not resucitate order added to her medical records. All of my family and close freinds have told us not to allow Yvonne to have the surgery. My husband and I are very scared, and do not know what to do, we just want to do what is right for Yvonne. The doctors have told us in laimes terms that they need to get a handle on her seizures because they are life threatening. My biggest fear is that my daughter won't wake up from one of these break through seizures. Yvonne is a very happy six year old, and we try to give her a normal life. Well heres the dillema, when I was four months pregnant doctors informed me that Yvonne had fluid on the brain and advise me to abort and as you can see I did not. When Yvonne was born a shunt was placed at a day old. She had her 1st seizure at 4months old. She has been diagnosed with congenital hydrocephalus, seizure disorder, mild cerebral palsy, and pervasive developmental delayment NOS. She's currently delayed to that of a 18mth-24mth old. My concern is with all these other disabilities will the surgery make her worse off. I am frightened and do not know what to do. However my husband and I will soon have to make the decisions to allow them to operate on her or not. She has already undergone four brain surgery where her vp shunt had to be replaced. If someone can please help or even shed some light on the issue please let me know.
A loving concerned mother