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Parental Dilemma

Tue, 06/27/2006 - 23:49
My son was first diagnosed with Juvenal Absence Epilepsy at the age of 13 in fall of 2003. We began then with one medication to contain the absence seizures. In March of 2004 he had his first Grand Mal Seizure. From there he has been tried on various medication to contain the seizures. By the fall of 2005 he was on Lamictal, Keppra, & Zonagan, and taking dosages 3 times a day. Despite this he was having Grand Mal seizures every 7 to 9 days. In December of 2005 he went into the Epilepsy Monitoring Unit at Cooks Children’s Hospital in Fort Worth, Texas. After 2 days of testing and 4 seizures he was changed from Zonagran to Depacote ER. This combination like all the others worked for a few weeks or a month and then the seizures would start again. He now has the VNS therapy but once again we are back to the seizures. My dilemma is in the fact that he is now 16 and cannot stay by himself. My job is our primary income and my wife’s job supplies excellent insurance (without which I would now in bankruptcy.) Therefore we are unable to stay home with him, but how do you find care for a 16 year old boy who can’t stay by himself. Are there any other parents that have faced this dilemma and how did you handle it? Regards, Josh’s Dad

Comments

Re: Re: Re: Parental Dilemma

Submitted by stylzz on Wed, 2006-08-09 - 07:56
What is the difference between Neurologist and an Epileptolgist?Does she specialize spacifically with epilepsy?I have not heard of that before.We are seeing Dr.Blaise Bergois at Boston childrens.I believe his title is head of the Epilepsy group in Boston,but no one ever mentioned an Epileptologist...Is there a big difference?

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