I can't believe I'm here, but I am (Absence Seizures)

(Cont.) After two months of minimal improvement and 4 pounds of weight gain, it is decided that she begin Ethosuximide (Zarontin) in addition to the Depakote (liquid Valproic acid now). At this time, I have also decided to begin some children's multi. vitamins, believing she may have some B deficiencies. Within 6 weeks, the seizures begin to dramatically decrease as well as my familiarity with my daughter. She became someone I didn't know...manic/bipolar 90% of the time. Slowly, the severity of the side effects decreased. Finally an entire day seizure free, atleast from what I could see. I was told she had 2 silent seizures for every 1 I could detect. I had my doubts on that however...ignorance is bliss. I couldn't see them and that was good enough for me. So, we started the clock ticking...2 years from her first day seizure free. If after two years of not seeing any seizures and having "clean" EEGs we would be able to start decreasing her medications. It's been almost two years now and I feel relatively confident that she is no longer having seizures. She has however experienced many changes in both her behavior and mental development. Her Neorologist was right as much as I didn't want to believe it, she has had significant memory retention and retrieval difficulties. She began Kindergarten writing her numbers 1-20...half way through the year she could barely write the number 4 consistantly. I believe her medications have been directly affecting her memory and in turn her development...they are nervous system supressants after all. Today, we just returned from her second clean EEG and have been given the go ahead to reduce the Valproic acid...somewhat faster than I was expecting. We are incredibly excited and anxious at the same time. I've been told by more than one person that "when the meds are stopped, it's as though the light switch is turned back on". I'm very optimistic, however I will be watching out for any break through seizures...as well as that brilliant and bubbly personality I've only seen glimpses of for the past 2 1/2 years. I hope this information is beneficial in that you are able to see that the road is rocky but can be navigated. We have to be supportive even when those around us don't support us...for our baby girls, we have to be strong! I'll be thinking of you and your daughter and wishing you well :)

Hi Susan! Well I was suprised to read your situation and feel very sad along with you, I am going through the same thing with my son. At first I questioned every doctor we saw. ( 3 neuroligists to be exact)Why did he even have to take the medication??? I can't stand giving it to him....he didn't seem to be affected by the absence seizures, in fact he has the best memory and is the smartest 4 yr. old I know. One of the questions I posed was, what about these kids out there that are hardly paid attention to... and there mothers don't notice that something is going on, do they live through it unharmed? My doctor said that of course there are kids that have not been treated and lived through it, but is that the chance you are willing to take? Of course my response is no, but there are so many things to worry about with putting your child on a drug they will be taking for years to come. I would love to know what you decided about treatment? I have my son on zarontin and noticed very little side effects, although I worry about long term just as much. I would love not to treat him, yet I would hate to see him struggle. It is the hardest decision I have made. I feel like either way it's got it's pros and cons. Let me know what you think...