New and completely overwhelmed

[swalinski]

Hi everyone. I am 31 years old and the mother of a beautiful 5 year old daughter who was diagnosed 2 days ago with Childhood Absence Epilepsy. This was confirmed after an EEG at Pittsburgh Children's Hospital and a visit immediately after with a children's neurologist. I am relieved to know what is wrong and why she was having episodes of staring and being "on pause" as her teacher called it. I thought I would be relieved to know for sure(the diagnosis is the same as what I assumed) but it hasn't made me feel any better knowing for sure. She started taking ethosuximide(generic for Zarontin) yesterday~3 ml twice daily for 7 days and then increasing to 5 ml twice a day. It is in the liquid form but she keeps trying to spit it out on me. It is a chore to get her to take any medication without a fight. Also she will be having an MRI to check for brain abnormalities in about a month and a half. She does have an epilepsy specialist who will be managing her treatment. There is no history of epilepsy or seizures of any type that I am aware of on either sides of her family.

 

[Paorrin]

Im sorry to hear about your daughter being Dx with epilepsy. My daughter was dx at 4 years old. She is now 11. I hope you get te seizures undercontrol soon and that the mri goes well. This can be overwhelming at times and i find these blogs/forums to be very helpful in support and a wealth of information as someone has been there done that before. Everyone has a unique but simular story. Please feel free to ask anything or to just vent....

Robert father to Abigail 11yo absence, drop, atonic, complex seizure types on felbatol, depakote, topamax, klonipin, has VNS Dx with subcortical band heteratropia (migrational disorder of the brain) with lennox gastaut syndrome

 

[RobinN]

Welcome Swalinski - I remember being overwhelmed when I was first told my daughter might have Epilepsy. A roller coaster ride followed.

My daughter does have a "birthmark" on her right frontal lobe, but she is also med free and seizure free (10+ months). When she was on medication she was having 6 tonic clonic seizures a month. Has anyone mentioned the modified atkins diet to you? You might also do some research on Neurofeedback. Nutrition and neurofeedback are what I believe raised my daughters seizure threshold.

Is your daughter able to swallow pills? You can buy empty gel capsules and fill them with the medicine. Or perhaps put it in a small cup with juice. Or get a toy that she can play with ONLY after she has taken her meds. Put it away so that it remains special.

 

[Lewall]

Far worse than being diagnosed ourselves, I believe, is finding out that our children have epilepsy. My maternal grandmother had E, my maternal uncle died from an epilepsy-related accident, I was diagnosed in my teens, and both of my adult children have epilepsy. Unfortunately, my son is stubborn and living in denial like I did at that age. Welding 100 feet off the ground and not taking his meds. His eeg was negative so the urgency is not impressed on him, but he has had more than two (that I know of) grand mals. I had to have some close calls in order for me to take this seriously. I could not cope with losing him to a preventable tragedy. Knowing my own close calls it scares me to think about this.

 

[Dutch mom]

Welcome Swalinski,

My son was on ethosuximinde twice (Ethymal & Zarontin) several years ago. His disliked the taste of the sirup/liquid and making him swallow it was a drama. Instead of the liquid the neurologist prescribed soft gel capsules filled with concentrated ethosuximide. Easy to swallow with a bit of food or fluid, no taste as long a he didn't bite the capsule. These made taking the drug a lot easier.

http://www.versapharm.com/product_family.php?pf=14
shows the 250 capsule, my son had 250 mg (orange) capsules as well as 125 mg capsules (yellow.)

 

[kwk]

I'm new to the site and joined just to talk to you. My son took Zarontin for 6 years. We had to buy the generic a time or two because Zarontin was unavailable. He complained profusely about the bad taste of the generic. We tried having it flavored by the pharmacy but it still made him gag. If buying the brand name is an option for you, I would highly recommend it. I remember how I felt when my son was diagnosed. If I have any advice based on our experience, it is to trust yourself. When I told his neurologist that he was still having seizures, the Dr doubted me but I pressed him until he ordered a 48 hr video EEG. He couldn't believe the results. At the time of diagnosis, the neurologist said they would do follow up EEG's every 4 years. Children do frequently outgrow this so I insisted that my son received one every year. I didn't want him medicated any longer than necessary. We received the good news when he was 11 that he was seizure free. He has had residual learning disabilities that we continue to combat. While the neurologist would not absolutely commit to epilepsy as the "cause" he did say that he is seeing more and more evidence in his practice that leads him to believe that there is probablility. Had I known earlier that reading problems are frequently reported by families I would have started interventions much earlier. Utilize any and all interventions available in your school (she should be eligible for a 504 plan) and find a good tutor. I wish you the best of everything for your daughter.

 

[momof3boys]

I'm new to the site and joined just to talk to you. My son took Zarontin for 6 years. We had to buy the generic a time or two because Zarontin was unavailable. He complained profusely about the bad taste of the generic. We tried having it flavored by the pharmacy but it still made him gag. If buying the brand name is an option for you, I would highly recommend it. I remember how I felt when my son was diagnosed. If I have any advice based on our experience, it is to trust yourself. When I told his neurologist that he was still having seizures, the Dr doubted me but I pressed him until he ordered a 48 hr video EEG. He couldn't believe the results. At the time of diagnosis, the neurologist said they would do follow up EEG's every 4 years. Children do frequently outgrow this so I insisted that my son received one every year. I didn't want him medicated any longer than necessary. We received the good news when he was 11 that he was seizure free. He has had residual learning disabilities that we continue to combat. While the neurologist would not absolutely commit to epilepsy as the "cause" he did say that he is seeing more and more evidence in his practice that leads him to believe that there is probablility. Had I known earlier that reading problems are frequently reported by families I would have started interventions much earlier. Utilize any and all interventions available in your school (she should be eligible for a 504 plan) and find a good tutor. I wish you the best of everything for your daughter.

Hi, i saw your post and wanted to let you know that growing up with epilepsy, ( My parents found out I had epilepsy at 18 months old) I also had alot of difficulties in school. I had some testing done in school to test for a learning disability, but scored too high to have any assitance, but because I had a doctor give the school a paper saying I did have epilepsy, I recieved the assistance I needed. I went into the resource area to help on papers, and when it came to tests, I understood things better if I had someone read the question to me. To this day, I am better at doing things "hand on" than understanding it through reading a book. Like watching a video is easier for understanding things, or having someone show me how to do something, etc. I just wanted to let you know that you can get the assistance your child needs in school by getting the doctor to give you a paper to hand to the school showing them your child has been dx'd with Epilepsy.