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.
to treat or not to treat
Wed, 11/08/2006 - 23:53Topic: Parents & Caregivers
Our boy (5 years old), was diagnosed with Epilepsy at 2.5yrs after tonic-clonic febrile seizures and a drop seizure when sick.
EEGs show absence seizures, which can also be elicited by hyperventilation. We've observed some absence seizures ourselves, but not very often. My 7 yr old claims that she observes him having an absence seizure about once a week. We've started recording that, and it's more like once or twice a month.
Against the advice of our neurlogist we've decided to NOT start him on AED meds. Mostly because of a fear of side effects. We thought that we would start treating him when he starts school. In the mean time we would take precautions to protect him against injuries due to seizures.
Now here we are 3 yrs. later. His seizures seem rare and mild (or are we missing them??). He has had several fevers without seizures. And he is doing great academically. He is only in Kindergarten, but is reading at at least 1st grade, if not 2nd grade level.
So, are we wrong in still holding off medication? Anyone else doing this? Any opinons, experiences, advice??
mkz
Comments
Re: to treat or not to treat
Submitted by scaredmom on Thu, 2006-11-09 - 00:30
my daughter was diagnosed a year ago we let it be in fear of side effects but it got to the point where she started having more and more siezers so we had no choice but to treat her.We didn't start them till two months ago and i feel that i should have started her sooner that way the siezers might not have gotten so bad.She has absence seizers.We felt that with grade 1 we better start thinking of whats best for her and not our fears so we started her.She is falling behind due to being tired because of getting use to the meds but with alittle extra work we can catch her up.So you just have to think whats best for him aswell.Good luck to you and your family.
Re: to treat or not to treat
Submitted by mar on Thu, 2006-11-09 - 04:30
Hi, You know what, no one knows your child like you. I am asking the same questions right now. I feel we have to consider what kind of seizures they have and how they change our childs day to day, when do they happen & are they in any medical danger. In our case our child is almost 10 but she has them when she is either into early sleep state or waking, so we are there for her at the time and have diastat if we need it. Mid Dec will be a year for us she has had 8 seizures with 4 months inbetween being the longest spread. When I read about others taking meds and they change in personality or school becomes a challenge or the most scary the siezures change to ones they never had before, we just cannot go there yet for HER. We are going to incorporate some natural balancing options for now like fish oils, flaxseed & acai and pray. But if circumstances change like frequency or they occur in the day when she could be dropping without warning that would be another story. It sounds like your son is doing really well, and what a great start on his reading! Your not alone and it helped me to know I was not alone in my thinking. It is hard enough to accept that our child may have challenges we can't and didn't want to imagine for them & choosing the best road for treatment has to be thoughtful. Take care and good luck. Keep in touch. Mar
Re: to treat or not to treat
Submitted by scaredmom on Thu, 2006-11-09 - 00:30
my daughter was diagnosed a year ago we let it be in fear of side effects but it got to the point where she started having more and more siezers so we had no choice but to treat her.We didn't start them till two months ago and i feel that i should have started her sooner that way the siezers might not have gotten so bad.She has absence seizers.We felt that with grade 1 we better start thinking of whats best for her and not our fears so we started her.She is falling behind due to being tired because of getting use to the meds but with alittle extra work we can catch her up.So you just have to think whats best for him aswell.Good luck to you and your family.