My sons EEG came back positive for seizures. What should I expect for his 1st neurology appointment?

Shannon - posted on 12/21/2011

There are so many reasons for seizures and so many unanswered questions. My son caught a virus when he was 11 months old and had a 24 hour seizure. Now we are dealing with the repercussions of that seizure as well as subsequent myoclonic seizures. Just a little information for your visit: Unfortunately don't expect any answers right away. There are TONS of medications and finding the right ones can be a trying process. You may ask about special diets. Some children have benefited from gluten free and ketogenic diets. You will probably be inundated with information. We go to STL Children's hospital, and love it there but we are going to get a second opinion in January from a clinic in Chicago because I just have to know that I'm doing everything possible. Medications have lots of crappy side effects, EEG's don't always show seizures that are actually there, and the whole thing is a long process. Don't mean to sound like a downer but we have been through a lot in the past year. The good things are, he seems to be able to progress developmentally despite having hundreds of myoclonic seizures everyday.

Stephanie - posted on 12/08/2011

My son is about the same and we are finally getting to the EEG stage. I have always known there was something. Everything cts and bloodwork always come back normal. He was also diagnosed at six with ADHD. I hope all goes well with your son and the good news is you know now!!

Cee - posted on 04/21/2010

I just want to let you know that if it is absence seizures, then those are the "best" kind to have. They are the only kinds that don't damage the brain when they happen. I know it's scary but consider it a blessing that they are not worse. Good luck and my prayers are with you!

Julie - posted on 04/19/2010

in what country , is the next question,to wat happens next, in australia if u on medicare its two hundred and forty first visit to the child peadician with half back on medicare then one hundred and eighty after that and half back on medicare then u go thru different medicines and triggers its all about going and finding out what causes it...

Ingrid - posted on 04/19/2010

I wish you and your son luck and strength. Our pediatrician referred us to a neurologist when my son had a couple febrile seizures three years. The neurologist had us get an EEG, MRI and a CT scan. The EEG can back with abnormal activity but the other tests were normal. We have gone for several video EEGs to find out my son has generalized seizures of the myoclonic type. He is on depakote for the seizures but I believe he is still having seizure episodes when he gets sleepy or is in the beginning stages of sleep. My son has also been diagnosed with ADHD. We have taken him to counseling and we are not sure if the ADHD is actually seizure related. My husband and I get frustrated when we feel, "there just have to be some miracle cure" which has yet to be found. Make sure you have adequate support and most of all, love your son for who he is. This community is wonderful to put it into perspective that you are not alone. Keep fighting for your little man, he is worth it!!!

Nicole - posted on 04/19/2010

Thank you so much to everyone who responded!

Our first neuro apt came and went. His neuro is ordering a sedated MRI and repeating the EEG. I am however disappointed that his next apt won't be until September! I have a consult this week with my son's pediatrician as they are helping me to find a Dr. that is available more often.

I'll update soon and thanks again!

Katie - posted on 04/07/2010

My son nathan's neurologist is really great. His absentee seizures weren't picked up until they did the sleep deprived eeg. I asked his doc what kind he had and found out that he has whole brain seizures. They only did the MRI after i mentioned to him that i believe he has them in his sleep. His MRI came back completely normal, so they don't seem to know y he has them. He is only 3 1/2 yrs old and bc of that when they did the MRI they put him to sleep so therefore his seizures didn't show up. The doc told me from the get go that he would have to been on meds for atleast 2 yrs and when we got close to the 2 yr mark i asked him if that meant he was going to take them off his med and he said "no, he has to be completely seizure free for 2 yrs before that will happen." So make sure u ask what kind of seizures your son has, how long he will need meds, and if they can pinpoint where they start at. For some if they can find where they start, they can find out more about what causes them. Ask if they think he will ever outgrow them bc some kids do. Also ask if they believe that your son should see an endocronologist as well bc some auto-immune diseases can cause seizures is some people. I asked my sons and he said no bc he was healthy but it never hurts to ask and double check. My son had 3 big seizures before he started having the absentee ones and i had to fight w/his peditician and the hospital to get them to believe me that they weren't just febrile seizures. Looking back i wonder to myself did he possibly have them all along in his sleep and i never knew about. But you can't beat urself up over not knowing. I have 2 other children who have adhd, but don't have seizures. And my other son has hearing and speech issues. I think i got lucky w/nate bc my brother had seizures when i was younger. And even though we know what caused my brothers and that's not y he passed away. I think it made me more aware. I just knew nate had more than just the febrile seizures and i know he's not gonna out grow them. I'm hopeful that he will. Oh and make sure u ask your neurologist what sports and/or other activities your son can do. Then make sure that u explain it to your sons school and teachers so that they know what to do should he ever have them at school. It makes it harder to keep track of how many they actually have when they're at school or in my case bc my son is 3 and sometimes just wants to ignore u. But ask them to try to help u keep track anyways as much as they can. Because that it something the neurologist is gonna wanna know every time u go to see him. I hope i've helped you some. :o)

Bobbi - posted on 04/03/2010

Don't want to scare you too bad but expect the unexpected! My son has had seizures since the age of 2 and he's now 12. The first visit is just routine - background info., test results, send you for tests, etc. Later, you can expect lots of tests - blood, MRI, Cat scans, EEG's, 24 hour eeg's, etc. You might even have lots of hospital stays (at the beginning, our neuro made us stay in for 3 days during med changes) and medicine changes. My hubby and I consider ourselves pharmacists w/all the med changes we've been through. I would do a lot of searching on the web & stay in contact with us since it seems we've been through it all. If you don't understand something, ask questions even though you think you'll sound like a pain in the butt. We've also had to be extremely rude to hospital staff when they didn't treat our son as well as we wanted - 4 times trying to get an IV started was enough so we demanded an IV specialist (we automatically ask for one before they start). WRITE EVERYTHING DOWN!! You will be asked for info. a MILLION times & you will forget it by the time you get to the neuro. I also made an Excel spreadsheet of my son's meds - doses & times - and carried a few copies with me b/c I got tired of having to tell the neuro and hospital. You will find out you're stronger than you think. Good luck & keep in touch!

E - posted on 04/03/2010

Make sure that you bring a copy of the actual EEG recording to the appt (if it is at a hospital/office that is not part of the group that your neurologist is from). They should be able to put it on a CD. The appt should last 30-60 min and should mainly be a history & physical. He or she may order further testing (MRI, CT, labs, etc). Another test that they can order for a later date is a VEEG (Video EEG) that is done as inpatient. It usually lasts several days and the purpose is to capture and characterize your child's seizures. While not everyone that has an abnormal EEG has seizures, your child's staring spells are suspicious. However, further investigation is warranted to connect these as seizures. Also, there are such physicians as "pediatric neurologists" and "epileptologists" (neurologists that specialize only in seizures/epilepsy - and many see children). Check out www.epilepsyfoundation.org for a list of specialists. Good luck!

Atena - posted on 04/02/2010

The neurologist will prob. order a mri test that will give them a better idea of were the problem is a eeg only only pick up irregular brain wave patterns my daughter is 9 and she has a seizure disorder her eeg showed the irregular wave pattern and the mri showed a leision on the right side of her brain. the neurologist we do a test in office that is said to bring on seizures although my daugther has never had one for that test. Also know that adhd is a disorder that is common in many epileptic people my daughter also has adhd and a non visual learning disorder all there disorders stem from the lesion on her brain also my child was 7 before she had her first big seizure and then she was diaginosed. but before then we never even knew anything was wrong but she has alway had these staring off spells that i later found out were siezures.