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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: Parental Dilemma

Submitted by Healer on Wed, 2006-06-28 - 15:01
Hmm, just a thought but perhaps you could find an EMT or Paramedic in your area that is looking for extra money. You could bring them in as "housekeeper" knowing they are medically trained should your son have a seizure. Being a former EMT of 15 years, I know that those on swing shifts like firefighters and EMS workers are always looking for other work. You might also bring in a person from your local VNA under the same guise of "housekeeping". I hope this helps, my thoughts and prayers are with your family. Healer

Re: Parental Dilemma

Submitted by dhemphill on Fri, 2006-07-14 - 16:07
Just out of curiosity, what neuro do you take your son to? My 4 year old is a patient of Jeffery McGlothlin. The list of good neuro's here in Fort Worth is pretty short. At least the ones that take my insurance. Are there any programs through your local ISD that will allow you be able to keep up your normal work schedule without fear of leaving your son home alone? My son attends the PPCD program at one of the FWISD schools and is on normal school hours. Of course the summer poses a bit of a problem, but we are fortunate enough to have my mother-in-law living 10 doors down. I'll look around and check with some people and see if I can dig up any information for you. Are you in Tarrant county or Dallas county?

Re: Re: Parental Dilemma

Submitted by TexasDad on Tue, 2006-08-08 - 22:37
Josh is currently being treated by Dr. Chacon at Cooks in Fort Worth. I beleive she is in the same office as McGlothlin. However she is a Epileptologist. We have been very pleased with her. As far as school they have been working with us as best they can. We live in Burleson in Johnson County.

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