I got a phone call this morning. DS6 has an appointment with a Ped Neuro on February 8th. Not too bad, when they were warning me we might have 2 to 3 months to wait.
So, for you other parents out there with kids who have had seizures, what should I expect them to check/test my son for? Are there any questions or concerns I should make sure to bring up on our appointment?
This is totally new territory for me. Nobody in either side of our family has ever had a health problem like this. I just don't want to have something missed or overlooked because I didn't know to ask.
Congrats on the appt. Just another suggestion for you: the neuro that sees my DD is the only pediatric practice in town (3 Drs). It takes 3-4 months to get an appt, but they will also put you on the waiting list. People cancel appts all the time, and you may be able to get in sooner. The downside to the waiting list is you may only get 24 hours notice. Also, if the Neuro wants to see your DS in (for example) 6 months, make that appt BEFORE you leave. I always bring a copy of the school calendar with me to appts, so I can make the next one (try to do pm appts on 1/2 days so I minimize the missing school act).
As for tests: you can expect a "normal" physical exam (height, weight, head circumference, eyes, ears, motor skills, balance, etc). The neuro may do a hyperventilation test (100 puffs on a pin wheel until a seizure is triggered or your son reaches 100 puffs). Do NOT panic if your son has a seizure at the Drs. In some respects you want that because the actual seizure is a great diagnostic tool. The neuro may also want to do an EEG and/or CT. My daughter has had both. Both can be used for diagnostic tools.
Once you have a diagnosis, the medication game can be very delicate. What worked for my daughter (Zarontin and depakote) may not work for your son. When a medication is prescribed, make sure you understand the dosage and all possible side effects. Many antiseizure medications (including depakote) control seizures in low doses, but can induce seizures at high levels.
How to prepare for the appt: first, don't be concerned about genetic causes. Neither my or DH's family had any history of seizure disorders. In DD's case, it was just one of those things. To this day, we don't know what caused it. Talk to the peoplel who were around your son when he had the first seizure(s). Try as best as possible to reconstruct the events prior to the seizures before you see the Dr. It may help the Neuro and you determine what happened. For example, by watching DD closely, we were able to determine 3 main triggers for her seizures: stress, both good (over excitement) and bad (getting in trouble); lack of sleep; and hyperventilation. By knowing this, we able to find the right diagnosis and control her seizures better (I am the sleep police! Probably one of the few moms who has a slumber party where the kids actually sleep!
). Enlist your son's teacher, and any other caregiver who spends significant time with your son to "watch" for anything abnormal. We didn't realize DD was having problems at school until I described to her teacher what her seizures looked like. Then suddenly 2 of her teachers told me she was having them in class.
My daughter was diagnosed with childhood absence epilepsy 5 years ago, just after her 4th birthday. With the help of medication, she has been seizure free since Oct 2005. We weaned her off of the Zarontin in summer of 2007, and we just got the word that her last EEG was completely normal, and we are starting to wean her off the depakote. I am extremely nervous and happy at the same time. 5 years ago I was in your shoes. I found this website:
www.epilepsyfoundation.org which has a great ecommunity called Parents Helping Parents. I post there occassionally, but not often. I actually feel guilty posting there because my DD's case is extremely mild in comparison to most of the stories you read there. But it was a great source of information in the beginning.
Best of luck to you an your son. Please feel free to PM me (so we don't hijack this thread any further!
) if you have any other questions or just want a shoulder to cry on!
Our school doesn't have any rules on them. The thing drives me nuts for some reason. Harder to store at home, and always wants to tip over
You should see them all scampering away to pick up their precious "stuff"...DH is the worst...he goes running in front of the kids to save his crap too. Mom makes sure she DOESN'T have any coffee before she get's downstairs....looks a little bit like this...
He gets on these tears and look out. Usually he just ignores it all but then it is like whirlwind and he freaks out on evey little thing and I have to scamper to "save" stuff. He has no sentimental value to anything, it drives me a little nuts.
good luck with that!!
He is our surprise baby. "Little Boo-boo-licious" LOL Gosh I can't even claim him anymore, EVERYone in my family is in love with him. We're due to head home to AZ in 2 weeks (my Gram passed away so we had to fly home to Alaska) and NO one is happy. They think I should stay and wait til dh to move back to Alaska 
So, since you are the cool Mom, is your house a hang out? Mine seems to be, but no one has claimed me as cool yet 
Don't worry they will go away the minute #2DS starts up. He is our "surprise" child too & boy aint that the truth 
Course he doesn't, he doesn't want to admit that he act the same way. 
they all start sounding alike. 
actually our oldest plays flute but the little one plays euphonium/baritone.
After 16 years and intense testing. They think mine are brought on by severe anxiety/panic attacks. 
