Eldest DD had a seizure yesterday...help

[SueM in MN]

Getting into the discussion late because we were on vacation.
My DD had her first seizure at school - they called me and said they were quite certain she had had a seizure. We (well, at least I) knew that she had a high probability of developing seizures because she has cerebral palsy. The school people had not called 911 because she never had any difficulty breathing and she came out of the seizure fairly quickly. By the time DH and I got there, she was kind of sleepy, but OK. By the time the ER doctor saw her, she was wide awake and wanting to go home.
The neurologist will determine what order they do things in and what specific tests are done. In our DD's case, they did an MRI first, then an EEG. They never did a 24 hour EEG on her. I was with her the whole time for the EEG. As was already mentioned, make sure you know what is allowed for each part of the test; you will probably be able to be in the room, but not talk or touch her.
Given the right circumstances, it's possible for anyone to have a seizure (if sleep deprived enough, dehydrated enough or just the right combination of flashing/flickering lights - there was a Pokemon cartoon at one time in 1996 that triggered seizures in a group of children.
( http://www.snopes.com/radiotv/tv/seizure.htm )
I don't remember the statistics (you can probably find them out from the Epilepsy Foundation), but many children have one or more seizures and then never have another seizure. The neurologist will determine the need for anti-seizure medication based on the type of seizures it is detemined she has. And, as was already mentioned, the risks of the medication is weeighed against the benefits of the medication. Even if placed on medication, some people can be taken off of medication after a time and never experience another seizure (as the neurologist explained to us, sometimes the medication seems to "normalize" the brain).
A seizure is a very scary thing to watch, but most seizures are much more scary than harmful. Before my DD had her first seizure, I had the experience of witnessing a lot of seizures in other people in the course of my job as an RN. But, no matter how many you have seen, it's much different when it is your own child.
Lots of pixie dust to you.

 

[taeja71]

I am so sorry you are going through this. DS (4) has seizures as well. THANKFULLY most kids grow out of seizures when they occur in chilhood.

Hello all,

We received a call from R's pediatrician today and she said that R' has Epilepsy. She didn't say what type of pediatric epilepsy Robyn has, but she should grow out of it by the time she's 18. The nerologist who did R's EEG was out of town last week that's why we haven't heard any thing. R's ped. said they won't worry about any medication until R' as her nerologist appt. (May 9th) or if she has another seizure before May 9th.

I am thankful that the EEG report did come up with some thing. I'd be really concerned if the EEG came up negative and Robyn's still prone to seizing.

I guess I'll try updating you all on or before May 9th. In the mean time, take care! Tae Ja

 

[taeja71]

Hello all,

We had our visit yesterday and of course Robyn didn't want to talk to the Dr.. We didn't get any pamplets or material. He wrote on the back of an evaluation sheet. We also received a sheet on seizures.

O.k., the neuro said Robyn has Benign Rolandic Epilepsy. She'll continue to seize at night until she's about 20. We've been prescribed Tegretol which we've decided not to give her until her seizures increase. (Robyn has not seized since early April).

What I find weird about the whole visit is the nero said that the frequency of seizures will increase as she gets closer to puberty. Something about the hormonal balance being out of whack.

So, for now, I'm holding on to the scrips the dr. gave us yesterday. We aren't in need of any further testing. The Dr. said that he knew exactly what Robyn's brainwaves were doing from looking at the EEG.

In closing, I guess our appt. went well. I'm combing the WWW to find more info. A couple articles I've looked at don't address the increased number of seizures during puberty.

Thanks all for your support! See you on the boards!

Sincerely,
Tae Ja
Robyn's mom

P.S. I don't have my glasses w/me. I can't find them. I can see and read most of the letters, but excuse me for any errors.

 

[taeja71]

bump for the evening crowd

 

[SueM in MN]

What I find weird about the whole visit is the nero said that the frequency of seizures will increase as she gets closer to puberty. Something about the hormonal balance being out of whack.

Here is a good article aboutbenign Rolandic epilepsy.
And another one.
There seem to be quite a few good articles.
And one more.
They pretty much all say the same thing - that this type of epilepsy tends to disappear all by itself at some point after puberty. Some of it may have to do with brain maturation.

One illustration is to think about epilepsy as an empty bucket. When the bucket gets overfilled, it will overflow (reaching the seizure threshold and causing a seizure). Different triggers (things that might tend to cause seizures like lack of sleep, dehydration) are like containers of water being dumped into the bucket. If you have enough triggers, there will be enough "water" to overflow the bucket (trigger a seizure). Some triggers that are small for my DD (like flashing lights) might be big triggers for someone else. A seizure could be triggered by a lot of little triggers added together or by a few larger triggers. One of my DD's triggers is the hormonal changes around her period. For someone else, that may not be a trigger. But I don know that many people have their first seizure as they are beginning to enter puberty. If they have a tendency toward seizures, that time is a trigger for some people (probably because of all the hormonal changes).

 

[Tinkerjane]

Hi Taeja71,
My son also has benign rolandic epilepsy and was diagnosed at 2 1/2, he is now 6. He is also on tegretol (liquid) and we also hesitated to put him on it until he had a seizure that scared us and then we knew we had to. Also, we were told he would probably outgrow it by 12 and don't know anything about them increasing through puberty. My husband had it as a child and it can be hereditary, my husband outgrew it at 10. So your daughter may outgrow it sooner.
The tegretol controls his seizures until he goes through a growth spurt at which point we have to increase his medication and it usually takes a couple of weeks for it to kick in so in the meantime he has very small seizures, but often. It usuallly happens when he is falling asleep or waking and the heat affects it also. Our last trip to disney it was very hot and he had one on Mother's day because of the heat.
Also, it affects my son's right side only. One of the first signs I see is this blank look on his face and I know one is about to happen, he starts to drool and the right side of his mouth starts to pull, he can't talk but when I talk to him, he understands and tries to nod in answer.
Hope some of the info helps and feel free to email me anytime if you wish to talk or have any questions. It is a very scary thing to go through.
Take care of your little angel.