Seizures

[lilbear]

from about 2 to 7 years of age my daughter had partial complex seizures where she would simply go into a stare spell briefly, she was treated with tegretol for a few years and then we weaned her off that and she was 7 years seizure free. in december 2007 at age 14 she began having full body grandmal seizures she had 1 in december 1 in february and now 3 over this past month. mid april they started her on valporic acid. she just began menstrating in february, the seizure she had in february and the first of the most recent 3 can be related to menstration but none of the other more recent ones can be. i have called her pediatric neurologists office and my family doctor has contacted them as well they say they can see her but not until september. they are doing a EEG end of this month as she has had no testing for the past 4 years. the neurologist has spoke with our pediatrician who is newly involved in our daughters care since february, and advised them to start her on the valporic acid again. she is otherwise a very healthy vibrant 14 year old girl. we have stopped her from her most precious enjoyment in life riding horseback and entering horse jumping competition and are not leaving her alone at all just in case. i have been pushing the pediatrian and neurologist to get tests started quicker and get her into the neurologist quicker but am having no sucess should i be overly concerned about delaying these until september? I had grandmal seizures myself from age of 5 months to 12 years and have never had one now in 28 years, to my knowledge I was the only family member to of had these and be diagnosed with them. It scares me that she was doing so well seizure and medication free and now is not only having them again but now having full body grandmal seizures. Is there any other tests aside from EEG and MRI that we should expect them to do? Me and the kids father are seperated, and I am now soon to be remarried. The childrens father doesnt realize the potential risks and it is very frustrating to me and my fiance. I used to stop breathing with mine however thankfully my daughter has not yet stopped breathing with hers and hopefully she won't have that happen but this is scary even for me as I was so young when I went through it myself any suggestions or advice would be greatly appreciated.

Scared mother

[Dr_prakesh]

I understand your concerns about your daughter.

Please clarify whether she is back on medication now or not...if yes what exact dose?

I would certainly not expect to delay medication of some kind (to wait for the tests) in this sort of situation.
This is because the decision to restart medication in this scenario will probably not depend on how the EEG / MRI turn out...I would probably start medication whether they are normal or abnormal.

Looking forward to hearing from you

[lilbear]

Okay heres the recent update, april 20th after a few more seizures they started her on 250mg valporic acid 1 dose a day for 1 week then 2 per day there after, however she had a seizure for 4 weeks in a row every sunday usually 5 am although this week was 9:30 pm. We just had saturday, her levels done they said she was 160 on saturday, sunday night again we were at hospital her levels were 360 of the valporic acid. monday morning she just had an eeg done which she fell asleep during this from being at hospital most of the night. the tech told her dad that was a good thing cause now they know she is having them even during sleep. he also said that some of the seizures, not all but some are orginating in the brain stem. i phone the neurologist after each seizure this time he finally increased meds as of today to 500mg in am and 250 mg in pm for 1 week then 500mg twice daily and has added 5mg of folate per day. We are still waiting for final reports on blood work and eeg. in 3 weeks we will retest her blood levels again and then he will phone me with a re assessment. however due to her history he hasnt even seen her since 2004. she has had no eeg or mri or anything since then as she was seizure free. we live an hour away but i told them i can get her there anytime and would like an appointment with him earlier than september. they still have not ordered an mri at this point. i take her back to the pediatrican june 6. i know when i was young having seizures grandmal they had me on phenobarbital and dilantin combined to control mine but fortunatly at age 12 i had my last one and age 14 i went off meds and still have no sign of one. my ex, her father, doesnt seem to understand that we shouldnt leave her alone at all until we are sure its under control. i'm scared for my daughter and sympathize as she is not able to do the activities she enjoys like swimming, horseback etc. and we were supposed to be going out of province in july to visit my fiances's family and have our wedding we have decided that because its a 2 day drive away we dont want to take the chance wit hher right now so we have cancelled those plans. i have not told my daughter yet that we have cancelled the plans but am going to tell her that its due to financial reasons so she doesnt feel bad as i don't want her to have anymore stress right now.
any advice/suggestions would be greatly appreciated.

[clinicalguru3]

I think that sometimes too many limitations are imposed on young people with epilepsy and this is not realistic...you should always follow the advice of a Dr you trust, but in general (for example) I allow my patients to swim in a pool as long as someone is next to them and in water that is shallow enough for the partner to stand in.

In terms of the MRI...this is very important if there is a suspicion of focal seizures but less so if they are all generalized....please send the full official EEG report for me to look at.

thanks