Epilepsy & Seizures Support Group

I think his neurologist should know what is going on for sure. they should of called him. It sounds very serious to me . the long lasting ones are life threatning and could cause brain damage if he isn't getting much oxygen. I think you should call his doc. and make sure he knows and cares as much as you do about its importants and finding out why they are so long.and keeping it from happening again if you can. I'll pray for you and your family that things get better for you. Iam sure they will,sheriP

I think his neurologist should know what is going on for sure. they should of called him. It sounds very serious to me . the long lasting ones are life threatning and could cause brain damage if he isn't getting much oxygen. I think you should call his doc. and make sure he knows and cares as much as you do about its importants and finding out why they are so long.and keeping it from happening again if you can. I'll pray for you and your family that things get better for you. Iam sure they will,sheriP

I am surprised the ER did consult an Neuro while at the hospital. At the very least they should have told you to immediately follow up with his Neuro. Should it happen again, I would insist on a Nero being consultuted at that time. ER is not like it is on the TV. They just make sure you are out of immediate danger. That doesn't mean something can't happen in a few hours.

Of course you are not overreacting. This is your child and you love him. Running a CT shows there is no tumor (thank God!) but does not give any answers you need.

Best,
Katie

Don't let those doctors play games with your child. I understand exactly what you are going through. Your story sounds so much like mine. My almost 5 year old daughter starting having seizures in Nov. The ER docs around here are worthless. If we have to go there I call her doctor before we go and as soon as we get home. The ER docs should consult with her neuro and don't feel bad if you insist that they do. If you don't feel comfortable with the treatment your son gets, please let them know. Twice in the last month our local hospital has tried to send us home from the ER when she needed admitted. The first time I said no, and they transferred her to a bigger hospital, that kept her for three days and treated it very seriously, the most recent time I just left the ER and called her neuro and they told me to bring her over to them to be admitted, and we spent four days there. Trust your gut and don't let the doctors bully you! You know your child. Best wished to you!

Joann had seizure like this too. Some lasting for hours. Dr gave us Diastat which is a rectal valium , if her seizure last for more the 5 minutes.

I use to go into status quite often.
My mother call my aunt who was an RN to come sit with me never once took me too the E/R.
My hubby has me at the hospital right away that's 4 miles away if I go into status and luckily doesn't happen often a
anymore.
staus is very serious and should be treated so.Always take steps your child is taken care of.

Christina-
All very good advice given to you and I would like to emphasize a few points. Although your neurologist was not consulted, I believe he/she should have been atleast to make a follow-up appointment before leaving the ED. Quite often, changing medications needs to be done in order to control the seizures which obviously needs to be done by your neurologist. I would also agree having diastat (for rectal insertion) on hand but again, please discuss with your neurologist.

And lastly, if something doesn't feel right to either you or your husband, go with your instinct and follow it up.

Dr. J

In may 2006 i had a status seizure that lasted over 12 hrs. it has been a devasting time for me since then. iam sill recovering from the affects of it. Yes, any type of seizure can be life threating, but more so this particular kind. they deffinately should have consulted a neuro. dr. i you havent yet you should imediatly. if ur some hasnt had seizures before this can cause more to come and may have side effects that u may not be able to tell yet. you are not overreating at all. make it a point to see a nuero.dr. its a very serious illness. they are very lifethreating and can in a child so young cause deppresion. get in contact with the epilepsy foundation. they can help in so many ways, finacially and counseling, and support groups,etc.

my son has been hospitalized for status twice. Definitely followup with a neurologist. My son is on Phenobarbital and we have Diastat at home to use if he has a seizure longer than 3 minutes.

Dear christina,
my name is sam, i am from australia. My first seizure lasted over 40minutes. I was ok. i was given medasilam or something. I like your son never have short seizures.I only see my neurologist twice a year. Although my General doctor consults with him alot. Do you and your husband consult with your sons GP the situation? prehaps you should discus your concerns with your family gp. Also with your sons neurologist. Do you keep a seizure diary? I was told to keep one for a while. I just had to write what it was like how long it lasted and if i had to go to hospital and if i hurt my self. I was quite shocked at one time i was in the ER and a dr said to my partner that with every seizure you dont need to come to get checked out.We just assumed that when a seizure has lasted over 5 minutes your supposed to call the hospital. but you will begin to recognise if your son is having a seizure that is not like his other seizures, also when i am having a long seizure i like to be talked to sometimes i can hear. Also have you been given any medication to give your son at home for when his seizures are going on to long. like anal valium? if not talk to your gp or your sons neurologist and see what they decide. just hang in there i hope your son gets better soon.
from sam x x