Third One Since 12/31... *Yet Another UPDATE*

1/15/2011:
Medicine it is. Robbie had another seizure this morning. I guess I really have no choice but to put him on meds at this point.


Robbie had another seizure this weekend. Noah got to see it and completely freaked out.

We are going to see Dr. Sy-Koh this week (Thursday) - and will discuss medication options but I figured I'd ask here too.

Does anyone have any experience with anti-seizure meds? There is a HUGE list of side effects on every one of them that are really frightening to me. Does anyone know pros/cons? His seizures have all been during sleep which is characteristic of this type of epilepsy.. but I don't know if the escalating occurrence means something.

Another question is relevant to something REALLY peculiar.. he remembers the seizure. He said he remembered the one before this.. but I wasn't sure if he was projecting or dreaming. This time - after he woke up a few hours later - he said "I had another seizure". Before I even told him. He said "Daddy yelled 'Jeannie!' and then you were talking to me." He said everything seemed gray and he knew he was shaking and was trying to stop himself. While he was seizing I did notice that he was trying to move his hand up and move his mouth. I asked if he was trying to talk and he said yes but it wasn't working. Does anyone know what that's about??

Thanks in advance for any advice/input!

Message edited 1/15/2011 6:41:04 AM.

Re: And Another One.

No input, but and that you're able to find something that works and doesn't have lots of side effects.

Re: And Another One.

Sorry to crash....first of all . I can't imagine how difficult this is.

A girl I was going through my master's program with had what we thought was a seizure during one of our classes. She remembered the whole thing, could communicate, had control of her bladder, etc. After going to different doctors, it was discovered that she had severe food allergies (chocolate, citrus, tomatoes, and a couple of other things). During a math education class, someone used a Hershey bar to demonstrate fractions. All she had to do was inhale it and she was on the floor, experiencing what looked like a seizure. She had benedryl dissolve tabs and an epi pen just in case.

When you said he could remember the seizure, this came to mind. It may be something else to explore. You said he's having them while he sleeps though, so I don't know if it applies, but it may be something else to look into.

Re: And Another One.

My brother is an epileptic. Has been since his early 20's. Henhas no recolection of the seizures. Gets a feeling, but nothing concrete before it happens. When having them, he is in a zone. Complete blankness about him. He looks right through you. He was on dilantin for YEARS. It didnt work for him, and it rotted his teeth out. He is 32 and currently working on an upper bridge for his mouth. He is currently on tripoldile, something like that. It has proven to be the best.My only real piece of advice is if theybissue meds, and give you a rx for the real deal and NOT the generic, get the real deal. There is a difference with these meds when one gets the generic. We found that out the hard way with my brother. Also, my brother never had anything come up in his eegs, ekgs, and tests whne having a seizure. His current neuro wants him to consider brain surgery. Thiey believe his type of seizures can be "fixed" with this surgery. I forget the name but will find out.

It is awful to watch someone go through a seizure. I have learned to just be calm and breathe. I hope you get some answers.

Re: And Another One.

My husband suffers from seizures. He doesnt remember that he has them. He was on tegretol xr for many years. His drs believe with tegretol xr that the brand name is important because with generics the slightest difference in dosage can trigger a seizure. But it was too costly and you need regular monitering with the Tegretol XR because its processed through the liver. He is now on Keppra (the generic form) He's been seizure free since October.

You have to look at it like this, all medications have side effects but they can save your life. It's not healthy for your brain to go through the trauma of a seizure so the good outweighs the bad.

Re: And Another One.

I don't have any experience but I have plenty of . I hope you get some resolution soon.

Re: And Another One.

I think they are called partial seizures, it's where the person can remember them.

So sorry you have to deal with this. I can't even imagine.

Re: And Another One.

No advice, I just really, REALLY feel for you.

Re: And Another One.

Posted by KerriSteve

I think they are called partial seizures, it's where the person can remember them.

So sorry you have to deal with this. I can't even imagine.

Re: And Another One.

Posted by rojerono

Posted by KerriSteve

I think they are called partial seizures, it's where the person can remember them.

So sorry you have to deal with this. I can't even imagine.

See - I wish our neurologist had said that. She defined partial seizures as jerking/motion of one part/side of the body and told us that they are VERY different from the tonic-clonic type that he has. His whole body was shaking and his eyes were open and dilated and he actually fell right into that postichtal state for a good long time after each episode so based on that I thought they were regular seizures. I am going to tell them that they need to prep people better when I see them on Thursday!

Re: And Another One.

nothing to add, just a huge to you and your family. it must be so scary.

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Posted by KerriSteve

See my Dr. told me they are all different. They never explain anything well.

Hope you get answers soon!

Re: And Another One.

Posted by nrthshgrl

I don't have any experience but I have plenty of . I hope you get some resolution soon.

Re: And Another One.

This may sound terrible, but what if you kept a video camera in his room ready to go and have DH video tape the seizure and give it to the doc that way they see exactly what is going on.

Re: And Another One.

Wow! I'm so sorry you are going through this - I really hope & pray you get some answers soon and that it can be managed. I cannot imagine what you must be going through.

ETA: OK I probably shouldn't be laughing now but how do you pronounce the doctor's name - is it "Sigh-Koe" bc 's how I read it. If so, I bet you have to explain a lot when you tell people you are "Dr. Psycho"

Message edited 1/12/2011 10:50:52 AM.

Re: And Another One.

Sorry to crash first

Seizures are scary. I was just doing a search on here because my 7 year old nephew had a seizure for the first time in October...had another one last week and another one tonight. Tonights seizure was a partial seizure (he loss vision...slurring words, etc).

I came on to see if anyone had any experience. I know they did an overnight EEG which came back at 60% abnormal and they also did an MRI which thank God came back fine.

They also reccomended he start meds but my sister is going for a second opinion. She doesn't want to automatically put him on meds if she doesn't have to.

I think the type my nephew has they said he should outgrow by puberty.

Hope you get some answers soon

Re: And Another One.

Posted by Stacey1403

Posted by nrthshgrl

I don't have any experience but I have plenty of . I hope you get some resolution soon.

Me too

Re: And Another One.

I can only imagine what you are going through right now. No advice, only

Re: And Another One. *UPDATE*

Well we got back from our neuro consult with Dr. Psycho! (it's actually pronounced SEE Koh - but I think psycho is funnier!)

The 2 seizures he had were full seizures - it's rare but evidently there is a possibility that some people can retain some memory of the event.

It is almost certainly BRE based on all of the data they have looked at. He should outgrow it by the time he is 13-14. That is good news.

She recommends that we put him on Trileptal since the occurrence has escalated. She explained that sometimes seizures are isolated events. He had a seizure in August and didn't have another one so it was okay to assume he might not have another or he might only have one more. However, since his events have been clustered recently there is reason to believe they may increase in incident. It's kind of like a seizure 'loop' where the brain I guess gets used to having them? I don't know.

We have decided to wait and see if he has another one within 2 months. We will look to have another opinion from a different pediatric neurosurgeon in the interim - although we are pretty sure they will give us similar info/recs.

We have the prescription for blood work and Trileptal so if he does have another one we can get the blood work going and fill the prescription. If he doesn't.. we will wait it out and continue regular visits with the doctor every 3 months.

I want to AVOID meds because there is a laundry list of potential side effects from headaches to memory loss. ALSO it's a mood stabilizer.. and he'd need to be on it for a minimum of 2 seizure free years and will have to be weaned. AND it depresses the white blood cell count so he might see a lot more (and more serious) illnesses. *sigh*

Thanks for all the good thoughts!

Message edited 1/13/2011 1:31:00 PM.

Re: And Another One. *UPDATE*

That is the rx my brother is on. Good luck.

Re: And Another One. *UPDATE*

Jeannie, do some research on the ketogenic diet. I know tons of people will pooh pooh this, but I saw my niece, who was on tons of meds for several years completely turn around with siezures after being on the diet.

They started with a fast, supervised in the hospital and she she went on the diet immediately after being discharged. She went from having a couple of siezures a day to having them a couple of times a month. I also think the severity of them decreased.


Ketogenic diet

ETA - I was just reading on that site that the diet is usually recommended when 2 or more medications have failed. I think what happened in her case was that the medications would work for a while, but she would develop a tolerance, the doctors would increase it and then it would stop working and they would switch her to something else. Your DS may not need this right now, but it might be good for you to have the information if you need it sometime in the future.

Message edited 1/13/2011 4:32:41 PM.

Re: And Another One. *UPDATE*

Message edited 1/13/2011 4:55:51 PM.

Re: And Another One. *UPDATE*

Re: And Another One. *UPDATE*

Re: And Another One. *UPDATE*

Just wanted to send some hugs and prays your way.