Topic: Parents & Caregivers

Created By: laura.day | 2015-12-23 15:24 | 1 Comment

My son (6 year old) was diagnosed with generalized epilepsy last May. He started out having absense seizures, and was put on depakote 2X a day.  Over the summer his seizures got seemingly worse...

Created By: momofboyz | 2015-12-23 11:09 | 0 Comments

My son's etho dose was recently increased to 6ml twice per day by his neurologist due to his 10ml per day dose not helping his seizure activity.  His doctor wanted to add Depakote, but we were...

Created By: kgrosser | 2015-12-18 13:56 | 0 Comments

Hello.

My nephew is 9 years old.

Brief history:

When he was 21 months old, he was diagnosed with stage IV/high risk Neuroblastoma.

He was NED in 2009.

He...

Created By: abhilasha | 2015-12-16 09:17 | 0 Comments

We are moving to Austin in the summer. I wanted to know who is the best neurologist for epilepsy in Austin Area. My daughter's had a complicated case since the last 5 years, and would like to see...

Created By: Concerned friend 12 | 2015-12-14 17:18 | 0 Comments

My best friends 3 year old was diagnosed 18 months ago. Originally her meds worked but caused serious side effects so a few months ago they started trying new meds. It has been hell for mom and...

Created By: momtothree | 2015-12-12 22:54 | 0 Comments

Hello,

My 2 1/2-year-old son has epilepsy (associated with SCN1A mutation, but controlled with medication). We are planning a trip overseas, and I am concerned about air travel. Does anyone...

Created By: momtothree | 2015-12-12 22:41 | 0 Comments

My 2 1/2-year-old son tested positive for SCN1A mutation associated with Dravet syndrome. He is diagnosed with epilepsy but not Dravet because he doesn't fit the profile. 

Are there any...

Created By: Nmarino022 | 2015-12-09 10:49 | 0 Comments

My son will be 2 in march. He was diagnosed with Atonic seziures (drop seziures) earlier this year. He was put on Keppra, which made his seziures happen almost every 5 minutes one day and each...

Created By: mperez405 | 2015-12-02 08:43 | 3 Comments

Has any one had genetic testing done on there children my son is 13 we just got his results and it should he had the gene DEPDC5,MPTPS2,TRIM37 THE DOCTORS WERE ABLE TO GIVE ME SOME ANSWERS but...

Created By: momofboyz | 2015-11-30 09:42 | 1 Comment

My 6 year old son was diagnosed with absence seizures in the Spring of this year.  We received a second opinion in September and he began taking ethosuximde.  He is currently taking 8ml per day, 4...

Created By: erin_gray1 | 2015-11-16 11:48 | 0 Comments

I am new to this forum and really any kind of support. I have hesitated to reach out as my daughter does not have grand mal seizures and others seem to struggle so much more. I am reaching our to...

Created By: Shirley ASRN | 2015-11-16 04:34 | 0 Comments

I have been fighting for legislation to legalize CBD oil in Indiana.  I have been very disappointed with our senate as they will not let a bill be heard or voted on for it.  I happen to find it at...

Created By: crlanier | 2015-11-14 07:20 | 0 Comments

My daughter (12) has been taken to the ER twice with severe abdominal pain but the Drs cannot find a cause for the pain.  Sonogram, XRay and blood work have been done but revealing nothing.  This...

Created By: PhiltheDad | 2015-11-14 05:00 | 0 Comments

Another wave of seizures tonight for my D. Back in the hospital. Just short of status epilepticus. Dose of ativan is the only thing slowing it all down. I'm half a continent away. Flying in a few...

Created By: wawadehut | 2015-11-10 09:30 | 3 Comments

First a little background:  My daughter (10) has been through a variety of medications in the five years since she started having absence seizures.   She still has a number of...

Created By: PhiltheDad | 2015-11-09 06:56 | 2 Comments

But this time it's worse. 

We are into year 7 with this.  Our daughter is now in college (a good thing) but after some years of good control, she has fallen off the wagon.  Several recent...

Created By: Abpie | 2015-11-08 11:05 | 0 Comments

My son has had approximately a dozen episodes that resemble seizures in the last 3 years. He is four. They occur when he hurts himself. They last only 10 to 20 second. He typically cries, then...

Created By: cindy.lou | 2015-11-06 19:11 | 1 Comment

6 year old with MRI showing MTS, but the EEG is showing generalized activity.  Does that mean the MTS definitely isn't causing her seizures? 

Created By: emilyb0429 | 2015-11-06 01:50 | 1 Comment

Hi, my 6 mo old was diagnosed about 2 months ago with ADNFLE.  This came after an 11 day NICU stay for seizures.  Luckily my career has given me plenty of experience with seizures.  However, I...

Created By: Ashlee076 | 2015-11-04 11:55 | 1 Comment

My 18 month old daughter has had horrible diarrhea since starting her medication. Coincidentally her 2.5 yr old brother is vomiting from the stomach flu so  i am wondering if anyone experienced...

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