Hello I am a mother of newly diagnosed 18yr son and I need help and experience with t

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Jacob's Mom

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My son(18 yr) is newly diagnosed on Sept 23, with epilepsy with tonic-clonic seizure. We had some relatives with suspected seizures and a grand-uncle with Parkinson's disease. I am scared and ignorant to the illness honestly today for example seizures were absent, and mixed total of nine today clustered the longest was 3 minutes today. His medications are Keppra 1000mg 2x a day, and Lamatical 25mg (slowly increasing over three weeks). My question is when is it time to go to the ER? I know a seizure and convulsion lasting 5 minutes is the guide line but what if my son has 9 cluster seizures from 11:56a.m. to about 12.23 is it time to go to the ER? Experience and opinions are welcome please.
 
Hi, and welcome to CWE!
I know that one factor to keep in mind is that if the person does not regain full consciousness between the seizures then a trip to the ER is the best course of action.
Did your son have 9 tonic-clonics and absence seizures in 27 minutes!? If so, that definitely warrants an ER trip.
 
I was on some medication once that gave me clusters, that is the only time I have gone to the hospital for seizures (except when I have hurt myself)
More than three, or if he has injured himself.

I started having seizures at 16, but I was diagnosed at 18 - a very difficult thing for a teenager, to suddenly get to the age where you can get out and start doing as you want, then you have a load of rules to follow.

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Welcome to C.W.E. do not be scared, it may be new but you are learning. Read a little bit and you will realise you are catching on fast. Your right the guide is 5 minuets but first you will know yourself even if its 3 minuets, you will just know. However saying that, I agree with masterjen if your son has a cluster of seizures seizure and does not regain consciousnesses after the first seizure and goes straight into the second seizure then it is time to go to the E.R.
 
Hello welcome to CWE,
I was diagnosed when I was two but sz's before two from what my older sister says. I'm 53 years old.
It can be a long drawn out process. If a seizure last 10 minutes or longer you go to the E/R.I've been having cluster sz's for a long time.
I never know what type of seizure I might have, Tonic-clonic partials, and I have complex and simple partial seizures.

I take Tegretol,Topamax, andFycompa for my seizures and nothing controls my seizures totally.
 
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Thank you everyone and I will let you know soon about his medication when discharged in a couple of days. To all that have responded you are soooo kind and I give you all a great big hug.:hugs:
 
Jacob's Mom

Keep us updated and best of luck to you both.
 
Hello
When my girl had her first ever seizure I was freaking out. It is a stressful time, but you will need to be there for him, be strong.

Take a deep breath and be assertive.

When stuff does settle down eventually, take the time to research the facts you have and reach out to those who will help your Son have a healthy life.

If you are fortunate to have a close caring family utilize them while you focus on your son at the time he needs you most.
All the best.
 
Thank you Blonde Angel, and I could not do this without my family. I am starting to calm down a bit more. The problem for Jake was having nine seizure in an hour all types too many for three days. I will keep everyone informed of new medications the hospital is giving him Keppra 1000mg IV three times a day and something else.
 
Jacob's Mom

Things are going ok for Jacob I hope.
 
My daughter started with seizures at 15 1/2 out if nowhere and no explanation has yet been found. I do not have any answers- as I type she is 17 1/2 and on the couch napping having just started a 72 hour video EEG.
One thing to remember- you can always call paramedics if you're scared. They can come and the. You can decide on hospital or not. We are not having the grand Mals anymore for now but little seizures where she can't talk or think right.
Just know you aren't alone. Some people have this just disappear, some aren't so lucky, but you should really learn all you can. I tried really hard at first and then lazed off when the TCs stopped. Unfortunately, she now seems to be failing all her meds and I have no idea what to expect in the future. I believe they are wanting to try the VNS implant - as of hearing this- I am reading like a mad woman.
No ones stories are the same but some hit home and can teach you. Find those people as you go through this. It is especially hard to find when there are no other medical reasons for the seizures. This whole thing has been crazy and doesn't seem to be stopping for us- hopefully that will not be the case for your son.



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I would say don't take him to the ER, but rather call the ambulance to take him. They can administer emergency medicine to him to stop the seizures. Never a good idea to touch someone during a seizure, unless if they are hurting themselves.

I have Ativan as an emergency pill that stops my seizures before they get out of hand, luckily i have an aura that warns me when one is on the way.

Zolt


:piano: :pop:
 
Welcome Jacob's Mom to CWE.

I agree with Zolt, take him by ambulance. I know I get better care there and they give me an ativan right away. Ativan stops seizures right away.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.
 
I hope you got some clarification from the doctor today.

I was diagnosed around the same age. It was more stressful for my mother than it was for me. Best of luck.
 
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