Seizure free for 6 years now.....

[mbb]

....Another thought for the timing of the medication would be to ask your Pharmacist. People don't usually think of talking to the Pharmacist, but they have a lot of education regarding drug actions/etc. and could probably be more helpful than that doctor was.

I'm biased - DH is a pharmacist

I wish your son's neuro had been a little more compassionate - less abrupt...it just makes a parent feel that much more alone, and not part of their child's care team.

Which you are, and you're doing a great job

Hang in there

 

[minkydog]

You definitely need a new doctor. All neuros are NOT like this. Unfortunately, epilepsy isn't nearly as "sexy" as, say, traumatic brain injury and a lot of doctors kinda throw up their hands, especially when it comes to chronic special needs. I once had a doctor tell me to "just get used to this. Your son is retarded and he's gonna have problems." Exit stage left..running all the way

Truthfully, medication probably is the answer, but kids often will have 'breakthroughs" when they are growing or changing or ill. Sometimes that means a change of meds too. DS10 has a great neuro who employs a really good Nurse Practitioner. Scott(the NP) keeps on his toes with regard to DS, tests him regularly and sees him about every 4months(more often when he seizes). We rarely need to see the neuro, but if there is any question, Scott hops right up and gets him. DS has been increasing his seizures this year probably because he is begining to go through puberty, so we have had to increase the meds to the max(Carbatrol--like TegretolXR). I'm sure we will have to switch him to something else in the next year.

Cathy--mom to Christian,10--also acts like an 18month old, but we love him anyway

 

[coachyo]

I know you know this and it you're working hard. Don't let them get you down
keep plugging away.
DD 10 started with seizures at about 18 months or thats when we really realized what was happending. Our nuero is always going a 100 mph but he knows when we are worried and want to get some questions answered. He was our 3rd one we went to as the 1st 2 just didn't do it for us. You'll find one who is right for you .

Our DD has sleeping problems at times and melatonin is a great help for her. Within an hour of giving it to her she is ready for bed. She still has breakthroughs but I think it helps.

We've through several meds and combos of meds and drug studies and are still working on trying to get seizure free. I haven't seen the mention of our drugs so I'll throw them out, (I know I won't spell them right) Trileptale and Levactratracin. They aren't our perfect fit but we aren't sure we want to do surgery either.

You've come to a good place for support and BeccaGrace gave you a good link to use. Good luck.

YO