Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

3 year old with seizures

Sun, 03/20/2005 - 21:12

Hello,

This is my first time posting.  In September my 3 year old daughter got up into my arms and had her first grand mal seizure.  Probably the scariest time of my life.  That night and the following week we had blood work, ct scan and an mri all of which came back normal.  The following week she had 2 more grand mal seizures.  She was put on tegratol and referred to a neurologists.  She had two eegs in the follwong weeks, an allergic reaction to tegratol, which landed her in the er, and three more grand mal seizures.  She was then put on dilantin which seemed to control her seizures.  We were seizure free for 5 months and in the last two weeks she has had two more seizures.  They have both been at night when she was really tired.  Currently we are in the process of switching medication to lamictal, but it is taking forever to get up the correct dosage.  I feel helpless watching her go through these seizures and I also feel like the child neorologists we are seeing just isn't giving us enough answers.  There still has been no explimenation of why this is happening to her.  It's very frustrating.  I  have been thinking about consulting someone different in search of more answers.  Should I stick with a child neorologists or see someone whe specializes in just seizures?  If so, does anyone have any recommendations of who is the best to see?  Thankfully her seizures have not changed her too dramactically.  She can be very hyper at night and sometimes it is hard to get her to sleep, but overall she hasn't shown any other side effects to the seizures or the medications.  We are hoping to enroll her in pre-school next year and hope to have the seizures controlled so we can send her to school somewhat worry-free.  I am grateful to have stumbled on this web site, at least now I don't feel so alone with this problem and that there are others out there that understand exactly what we are going through.  Thanks to all of you who post.  Deb

Comments

RE: 3 year old with seizures

Submitted by crysta95 on Sat, 2005-03-19 - 14:58
Welcome, Deb.I've not been here long either. My 7 year old was diagnosed last October, and it's been a roller coaster ride since. She has good days and bad. The last 2 weeks, she has had a lot of bad ones, including today. She's been sick, and this is affecting the control that we had seemed to be achieving with her meds. I'm with you 100%!! It's so very frustrating. After sitting and holding her while she seized, I ended up taking a shower and proceeding to have my own breakdown then!I just keep taking it one day at a time! Things have to GOT to improve!Crystal

RE: 3 year old with seizures

Submitted by Cedar on Sat, 2005-03-19 - 15:58
I would like to respond not from a mother's perspective but rather the person who has epilepsy since early childhood. I am 44 and only last yyear learned why I had E. since childhood. It was figured out not on an EEG test but rather a MRI. It is a congenital brain malformation. If you want to know the cause of it I will let you know one on one. However. In regards to who to see to get the care you need to best help your child(s), I have seen a number of Neurlogist and it was not until I went to someone who specializes Epitomologist) in Epilepsy that we were able to find the cause, be given the correct and accurate diagonosis of what could and could not be done. It has not been an easy year for me but I am finally understanding my whole situation better than ever before. I also would like to share that for children it is nice to beable to think all can get back to normal However with epilepsy it is not always possible simply because they have challenges rarely understood by their peers . I wish you all much support.

RE: 3 year old with seizures

Submitted by angel_lts on Sun, 2005-03-20 - 08:27
In my opinion, I like my epileptolgist to work with, they just seem to know more. When you work with the neurologist they only know so much and then if they cant help anymore then you need to move on.But as long as the seizures are not bad then you dont have to worry.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.