I looked up Pediatric Epileptologists and saw there is one at Boston Children's Hospital. I don't look forward to driving in the city, but it is do-able adn I'll do it if it is better for Anthony.

My hubby asks: why not see if the neurologist can do something that works first though? If she gives him meds, and they go away, then maybe there is no reason to see someone else, know what I mean?

Otherwise, is it possible to see the epileptologist like once a year? and still see the neurologist every 3 months like we are now? And would it be insulting to the neurologist to bring that up? I'm not sure.

Thanks!

The doctor your son needs for his seizures only treats epilepsy. Neuroogists treat all things neuro related and ADHD and Touretts are outside a general neurologists training. ADHD and Tourettes are also specalties. You might be able to find those specialists for each one at the same Major Medical Center, but you cannot get the proper care for your son from a doc who doesn't the the specific training needed. His seizures will worsen if not stopped completely and that brings cognitive decline over time. If they can be stopped, it is the right time to take care of that. There are so man other options available now. Who knows. It could be that the symptoms/signs that gave him a diagnosis of ADHD is really due to the same seizure disorder. Epilepsy affects people differently and is very easily misdiagnosed with bad results for the patient since they don't get the proper care and the illness worses. By the way, the statistics re meds are: Once one med fails to stop the seizures completely, there is less than a 15% chance that any med will ever stop them. That is evidence based. Those other options that could possibly help your son can be found only at a Comprehensive Center. What state are you in ? tattoo

Thanks for the info. We are in Connecticut.

He is going to the neurologist tomorrow morning to talk about his EEG results and what to do next. I am not sure what to say to her tomorrow. Would it be considered insulting to tell her I'd like to see an epileptologist? I am not sure how to handle it/bring it up.

There is no need in mentioning it to her. That was for your information and education only. She may prescribe a med for your son and who knows, it may stop his seizures. Give it a try, but you know there is another route if they don't stop them after a good try. She is not the one to arrange that appt, so do not mention it to her. Go there and listen. Ask lots of questions an write them down if you have to. It is easy to forget during an appt. Describe what is going on, take your seizure calendar, and see what her plan is at this point. Find out diagnosis and type of seizures, but they seem like Partials, both Simple and Complex. There is more that one cause for seizures, so see what she thinks abt a possible cause. In some cases, there is no known cause. Let her do her thing and start a treatment plan, but if the meds do not stop them, you know there is another route out there, so all is not lost. Get PCP to do the referral at that time, not tomorrow. Even if you did end up at an Epileptologist at a Compehensive Center, after they come up with a treament plan that works, many times they refer back to the local neurologist to manage the case. so you will already have her to come back to if it turns out that way. I will check on Comprehensive Centers in your state. Tattoo

I don't need a referral or anything with my insurance, I can call and make an appt myself-- unless the childrens hospital requires one for themselves.

I found where I would go, Boston Children's Hospital. http://www.childrenshospital.org/cli...geS1549P0.html

Thanks for the info :) I'll let you know how tomorrow goes.

It was a long day and Anthony is now sound asleep. I think Anthony made me sprout a few gray hairs- ha! The dr called his EEG "quite impressive". Apparently there is a LOT going on in that head of his. Mostly on the left side.
He had to have blood taken today, which will also need to be done on a
regular basis- fun! He also needs to have an MRI done, but I don't know when yet.

She gave me a rx of Depakote, but said to wait til she hears back from the cardiologist.

Depakote has been approved!! Just have to go in for a follow up EKG with the cardiologist in a couple weeks.

Hi Dawn,
I took Depakote for many yrs. and it worked great I just had to have a lot of blood test done to be sure that the drug didn't affect my liver or lower my platlet level. One side effect from the drug is anorexia a lot of people can either gain or lose a lot of weight. I would eat 3 meals a day along with snacks and I still lost over 70 lbs. in 4 months. Here's wishing Anothony and you only the best. May God Bless You Both!

Sue

Thanks for the info! I hope that for him it is the opposite! He is skin and bones!