seizures

[kim hudson]

Hi again,
Anyone know some more about the seizures? Andrew had little jumps or startles when he was about 18 mos or so. He had a video eeg and was put on phenobarb. After about a year and a half or so, his doctors started thinking about weaning him off. (he seemed to be seizure free and no adjustments had been made to the phenobarb.) He has remained seizure free by all accounts for the last 3 years and just this past week, started having little jumps again. (I'm pretty sure they are seizures) His PCP says we will log them for a couple of weeks and go from there. Any comments?

[Gretchen]

I would say those jumps are Myoclonic jerks. I need to get Simon's on video--I wanted to show them to someone else also. Simon's are not helped or stopped by any meds. I would think that's what they are and seem to be very common in our children.

GOOD LUCK!

[Cora Byrne]

I dont know anything about seizures but i have noticed that sometimes after Billy wakes up he does a funny thing for about five minutes. It looks like he is burping without opening his mouth then his eyes open wide and he drops his head to his chest (like he has lost the power in his neck). He then lifts his head again and repeats this after a few of these his eyes start to water. Im a bit scared that these could be seizures but then I think maybe im been paranoid just cos the doctor said that he could be prone to them am I making a mountain out of a mole hill? Mabye I should video him next time and someone could have a look and tell me what they think it is....

[Gretchen]

Hi Cora, Definitely video tape them. That helps so much when you talk to the doctor. This is a link to 2 videos on Si's site: http://www.simonpeters.org/videoclips.htm

The first one starts as a grand mal and ends with atonic (which is like the dropping you're describing) and the second one is mostly just atonic. I hope viewing these helps you.

Write me if you have more questions!

Gretchen

[the zanes]

Hi Kim,
This, unfortunately, is exactly what happened with Jake, right down to the phenobarb and the weaning off and the couple of year break. Jake is now back on seizure meds and is not entirely seizure free. He went through a really rough stretch with many hospitalizations and even stopped breathing during some episodes. Through the countless eegs (many in the hospital, 3 72 hour takehomes), they only managed to catch one seizure.

My advice is to watch very carefully. Even the medical community is fooled by the types of episodes our PKS kids have. If you are sure they are seizures, then unfortunately thats most likely what they are and you should be very confident with the doctors, including letting them know how common these seizures (or seizure type episodes) are with our kids.

We wish you the absolute best!!!

[kim hudson]

Thanks for the input. Were the seizures the same type of brief (2 or 3 second) myoclonic jerk? Andrew has not had ANY again since last Friday. Is that typical with them too? We are all watching him like a hawk. I really feel like what they described to me at school was indeed seizure activity. (they are the ones who spotted this last week) How is Jake doing. By the way, my youngest son is Jake, also !

[the zanes]

Hi

Yes, at times, especially in the beginning, the seizures were quick jerky motions (myoclonic). Jake would also go stretches with no episodes making the whole thing even harder to predict and understand so that is typical. This all just sounds so familiar and I can tell you that Jake definitively had and has seizures but that they are also unlike almost all other typical seizures!

Jake is doing pretty good - we are faced with decision on major hip surgery as his hip pops out of the socket constantly - another trait shared by lots of our PKS kids.
His seizures are somewhat under control but not gone.

[kim hudson]

Again, thanks. We, too are debating the hip surgery for the same problem. Although at this point, I think we are going to take the wait and see approach as the risks seem to outweigh the potential benefits. (at least for Andrew) Both the ortho as well as the physiatrist do not feel he is in any pain and that would really be the main benefit. They both have also said that this would not impact his ability to sit/stand in the future unless he starts to have pain. We will look into it again if that becomes the case. In fact they also agree that we should "challenge" his hip in multiple positions. As for the seizures, it has now been another 6 days and nothing. Thank God! I am hopeful that if they are returning, that it will be infrequently. (of course) Anyway, thanks so much for the info. It is amazing to compare the similarities. Will your family be attending the conference in Philly? Until next time.

[the zanes]

Yes, We will be in Philly! Hope to see you there - will we?

[kim hudson]

Yes, We, too will be there. I can't wait to meet some of the other kids and families. Hard to believe it is almost June!