What do I do when he's having a long partial?

[ccaronn]

Hi, some here may know that I have a developmentally disabled son who has been having partials every day for the past 10 days. The neuro prescribed additional medicine (Keppra) and he just doubled my son's dose yesterday. So, my son is taking 500 mg of Dilantin and 2000 mg of Keppra now. My son had a painful partial in the car about 20 minutes ago and it lasted 30 - 35 minutes. Is that typical? It seems long to me. He kept saying "ow, ow, ow", as if the headache pains were sharp and severe. His right hand cramped and at one point his arm jerked and I thought he might have a full tonic clonic. He said he smelled something and asked me what it was. I didn't smell anything. So, the symptoms are: painful headache, hand cramps, intense agitation and "smells". What do I do for him during these partials? My neuro keeps administering care to us through his nurse over the phone. Our neuro is not an eplilepsy specialist and the specialist we're trying to see in town is booked until May. On April 7th, we're going to the Epilepsy Center at Rush U. in Chicago to talk to Dr. Michael Smith, an expert in epilepsy in the developmentally delayed. But, that's 2 weeks away. Please, is there something I should be doing when my son has these seizures other than trying to keep him safe and calm? Does anyone know what types of seizures he's having? I called the Epilepsy Center at Rush for help a few minutes ago but they close at 4 PM. Any insight would be so greatly appreciated.
Thank you,
Christine

 

[Nakamova]

Hi Christine --

What you describe sounds like simple and perhaps complex partials, with myoclonus (the arm jerk). Is your son alert/aware the whole time? Can he remember everything that has happened? If so, then the seizure would mot likely be a simple partial (which can feature things like phantom smells). Simple partials are usually fairly brief, but your son could be having waves of them, or they could have progressed to become complex partials.

If your son was only somewhat alert, or appeared to be on "automatic pilot", and/or had no memory of what occurred, then the seizure would be more likely to be a complex seizure. He could also have a simple partial seizure that changes into a complex partial seizure.

As for treatment -- it sounds like you're doing everything right. Keeping him safe and calm is the main thing. Are there things you know that help your son when he's having a headache? (Like a cool cloth on the forehead, or blocking out light). Hopefully a neurologist may be able to give you more guidance. Sometimes a short-term medication like ativan can be given to try and stop the seizure.

 

[ccaronn]

Hi Nakamova,
I like your name, btw. Yes, he was alert and very, very agitated. It seems like he's in pain and that's what I am struggling with the most. I thought I saw some absence seizures earlier in the day today. I think you're right though. I think he's having waves of simple seizures. It sounds like it to me. What is Ativan, please? Thank you so much for your help!!
Christine

 

[Zolt]

Hi Ccaronn,

Ativan is an emergency pill that i take when a seizure comes on, it supposedly stops the seizures.

"who has been having partials every day for the past 10 days." Did you notice these activities before he started on Keppra? Do you think this might be related to the new med, Keppra? Did it get worse when he upped the dosage?


iano: op:

 

[ccaronn]

Hi Zolt,
Ativan is something that might stop a seizure? Where do I sign up for it, please??

His partial seizures started before the Keppra - about 5 days after two tonic clonics. The neuro increased his Dilantin by 100 mg to 500 mg per day and he seemed fine but then the partials started 5 days after the tonic clonics (and the increase in Dilantin).

The episode today was worse than yesterday's partial, much worse, but about the same as some he's been having since March 15th.

I think the Keppra is helping but, honestly, it's hard to know for sure.

Thank you for helping me, Zolt.
Christine

 

[Zolt]

How old is your son? Is he big in size? Definitely you need to talk to a seizure specialist. Maybe even take him into ER if it seems to warrant it. For Ativan, his doc would have to prescribe it.

At my hospital, they have an advice nurse, that one can call and tell them the problems and they can offer some help. But if it's severe, they will ask you to go to the ER. When i had my first grand mal, i called the advice nurse and told her i had what seemed to be a faint spell. Well she told me i need to get checked out at the ER. I went there and that is when they found a baseball type tumor in my head.

 

[ccaronn]

Zolt,
He's 27 & weighs 220 lbs.
Did removing the tumor cure you?? If not, why not?
Thanks,
Christine

 

[Zolt]

Hey Ccaronn,

Yes and no, the tumor removal did stop all the negatives that the tumor caused. The biggest one was my going into a coma if it was left in there for any longer. That is why they immediately took me in to do the surgery. But since it was so big, the removal left scars on my brain that caused my Epilepsy now.

The months leading up to the discovery, i was having horrible headaches every couple of days and auras where lightning bolts would slowly travel across my vision.

iano:

 

[ccaronn]

Wow. Your family must have been crazy with worry.
How are you? How is life for you?

 

[Zolt]

Well everything happened so quickly, there wasn't time for my family to worry. Monday evening I got diagnosed, then Wed evening had surgery and then Friday evening i was told i could go home. But i asked to stay one more night just to be on the safe side.

Other than the seizures, life is good. I have my life in order, roof over my head, food on the table and savings in the bank. And i have a condo that i could rent out for nice sum of money here in the bay area. So hopefully i can retire early.

 

[ccaronn]

That is awesome. I'm so glad to hear it.

I'm waiting for better times here myself.

I'll see you around, Zolt, take good care of yourself.

 

[valeriedl]

As far as going to the ER my neuro recommended that if I'm having a complex partial or TC that lasts over 10 minutes it would be a good idea to call 911. I don't know if he's mentioned anything about simple partials and the ER or not.

I very rarely have TC but if they do last that long we do call 911. If I'm having a complex partial that lasts longer than 10 minutes my family decides if they think it would be a good idea to call or not. They usually don't because I'll be out of the seizure by the time the ambulance gets there. If I'm having simple partials, even several in a row or in one day, I don't think they've ever called 911.

That's just how my seizures work so your son might be different. I'd go with your gut feeling about it.

After almost all my seizures I have horrible headaches, it feels like my head is going to explode. I've tried taking different meds, over the counter and prescription, but they don't really seem to work. You can ask your neuro about something that he could take.

The only things that normally works for me is a bag of ice on my head and listening to music through my headphones to block out noise. Your son my be better being in absolute quiet so you might want to get him ear plugs. I also have to be in the dark with absolute no light, any light kills my head, so I put something over my eyes. I've just got to sleep the headache off which may take hours.

I hope you get some answers and help when you get to see the dr. Good luck!

 

[giveasmile]

Ask whichever doctor you use for emergency medication you can give, and instructions on when it is ok to give , or when you should just go to the hospital.

I am really glad that you are looking for other doctors. I don't like that you can only communicate through the nurse and have no help or guidance in a situation like this.

I hope things are better today and know that you are helping him just by keeping him safe and calm.

 

[ccaronn]

My son was seizure free yesterday! Yesterday was one week since
adding Keppra for his partials. Do you think we just got lucky yesterday or
is the Keppra starting to work?

Then that explains why my son thought the sun
was too bright when we were in the car (after what
I think was a wave of simple partials). It was a cloudy day but
he said the sun was hurting him. It IS sad that our neuro is
so disinterested & we have travel a half a day one way to get
good help. We live in a mid-size city too.
Thanks to everyone here for your valuable time & help!!

 

[Abbie]

Sounds like what happens to me when I have complex partial seizures. I can get horrible headaches with them and sometimes on and of for several days after. I also get very sensitive to and change in light during the seizures and have to shield my eyes as I go into a room or outside. I've usually have the medical response team with me for an hour, up to 2.5 hours before I'm fully aware and responsive to what's happening and they can get me back to my halls of residence so I wouldn't necessarily be too worried about the duration unless it is longer than his seizures usually last. There isn't that much you can do, just keep talking to him/ reassure him so he knows you're there with him. If he's finding it difficult to respond to questions because of the seizure it might cause him to get frustrated so if that happens ask him to squeeze you hand in response, I often find it hard to speak during complex partial seizures. One of the medical response team at university askes me to looked at him every few minutes to get an idea of how responsive I am, to see if I'm improving or deteriorating. I get jerking too which definitely gets worse during a seizure. If this is happening just keep him safe, move anything he could hurt himself on when he's jerking, take anything he's holding.

 

[Ruth]

When my seizures last more than 10 minutes, my husband sends me to the ER via ambulance. I take Lorazepam for emergencies. It is equal to Ativan. At the ER, I am given Ativan. They can prescribe Ativan for your son at the ER.

Smells, sun bright, etc are aura's letting you know that a seizure is coming on. Call his doctor and find out if the increase in Dilantin is causing the problem.

It is good that you are staying calm. It is important that you keep him calm.

You are doing great!! Take care, Ruth

 

[ccaronn]

Ah, Abbie & Ruth, you have helped so much!
Thank you! My email is causing problems for the Administer
of this Forum so I don't know how much more I'll
be able to add or write here.
Thanks again for everything!
Christine

 

[Ruth]

Christine, please do not leave. The Administrator has had problems with mine and everyone else's emails at times. It will be straightened out.