Why is our doctor not putting my son on meds?

[soehls]

Neither of the pediatricians (general peds, not neurologist) that read my sons EEG report thinks his seizures are nothing to even do anything about right now. The EEG showed two "spikes" during his EEG. So his brain isnt showing constant activity, just spikes, whatever that means. They said his whole brain just "lit up", prompting one to say he had a generalized seizure. The other doctor said he was having the activity come from the front, left area of the brain.
Obviously they both read the report differently. But the fact is he IS having seizures, why the casual wait to see the pediatric neurologist in a month? Am I just overreacting (a real possibility :dontknow or do I need to push and get another opinion from a different doctor?
He is having several seizures a day, where he reports it feels like he is walking in a dream, weak legs, dizzy and blurry vision. A few months ago this would happen once a week, now it is sometimes 4 a day, though the average is one a day. He usually complains of being tired and doesn't feel good several times a week.
So your honest opinion, am I just making too much out of this? Could he possibly have a grand-mal seizure?

 

[Autumn Breeze]

Anything is probably possible....

And sometimes it's hard to remember that the doctors work for you. If you aren't happy with the way they are handling, or aren't handling your son's treatment...PUSH. Push them for answers, or ask them for a referral to someone else. Ask around here for local recommendations too.

 

[soehls]

Yes, I agree. Thanks so much for the encouragement. My question is, what do I need to ask them to do? We cant get an appt. with the neurologist until Aug. 29th at he earliest, so I feel like I am just stuck waiting and unable to do anything. He is one of the very few children s neuros for several hundred miles so I don't have much of a selection. Should I push for an in hospital 24 hr. EEG? Ask my insurance company to refer me to someone for a second opinion? I am NOT a sit back and do what the docs say kind of person, especially when it comes to my kids.

 

[Autumn Breeze]

I would use the time between now and the 29th to do a few things.

Record your son's activity, video and written.
Research what you're seeing, and your options so that when you do get in to see the doctor you have a list of observances, and a list of questions.

You can call your insurance company to find out who else they would recommend, absolutely!!

And you can probably call the office every day, or every other day to ask about being notified of any cancellations, if you can't get in earlier, this might be one way to move up a few days/weeks.

I understand not wanting to sit back and wait, sometimes we do have to take advantage of that time to further educate ourselves so that we're less panicked and more prepared! (((hugs)))

 

[Cint]

If my son were having several seizures a day, I would call the neuro's office every day and push to get an appt. ASAP. If they won't, call another neuro's office. When you call the office, tell them them your son is having numerous seizures a day (either SP, or CP) and needs to be seen by a pediatric neurologist NOW. If it isn't taken care of soon enough, it can have the kindling effect, causing more seizures, either more CP's or eventually TC's as well.

 

[soehls]

Thanks Cint and Chargingbird. I just had a little tiff with my husband. He says I am making too much out of it, I say my gut feeling is telling me to do more. I will look like a panicked, foolish mom, I don't care. There are very few times in my 23 years of being a mom to 6 kids that I felt like this and had it be nothing. So I will take the advice of both of you. I just made a PDF of a seizure data log, I can share it for others if someone tells me how to do it.

 

[Cint]

Soehls,

As a mother, trust your instinct. You know better than anyone, other than your child.

30+ years ago when I started having seizures, the docs told me initially it was no big thing. It turned into a big thing. I ended up having refractory epilepsy that wasn't stopped by meds, brain surgery or the VNS. Mine started out when I was 22 years old as SP & CP and then one day after my GP said it was hypoglycemia, I had a bad TC. It was downhill after that.

 

[epileric]

Have you asked either doctor, especially the neurologist why?

It could be as simple as a misunderstanding of how they explained something.

 

[LisaBee]

You have gotten great advice here. My daughter 11, has been having what I think are seizures in her sleep. She has had a handful of Grand Mals in her sleep since these episodes started. The Neuro thinks they are Parasomnias (night terrors) even after the G/M's. I disagree so Im going to see someone else. My gut tells me he is wrong. I have been keeping a journal and video taping with my Iphone until I can get her in with someone else. He did give her Keppra after the second G/M which is helping the intensity/frequency of her seizures but not eliminating them. I have been researching until my eyes almost bleed. I just need some answers. Keep pushing. Mama knows best!!!

 

[soehls]

LisaBee, I see we are on the same boat with out kids. I find it ridiculous and wonder how on earth any trained professional can think a Grand Mal could be mistaken for a night terror. I just looked up Parasomnia on the Websters Medical dictionary and got this....
Parasomnia: A sleep disorder in which odd or dangerous events occur that intrude on sleep. The parasomnias include sleep talking, sleepwalking (somnambulism), sleep terrors, REM behavior disorder, and nocturnal dissociative disorder.
Glad you are going to another doctor. I agree with you, we have to keep pushing. You go mama!!