Neuro, dentist and a very important question

Ricky and Andrew on Lombard st.
Originally uploaded by Beckerbuns

I blogged last about what I thought was an absence seizure. The neurology nurse finally called me back after I called and left messages twice. She said it sounded more like a complex partial seizure, because people who have absence seizures usually don't have the other kinds that Ricky has had (complex partial and tonic-clonic). She suggested we up his Trileptal... Going up 1/2 a tablet in the evenings this week and going up another 1/2 tablet in the mornings next week.

I asked AGAIN about the dizzy spells. She told me that there really is nothing else they can do for him. This is not the first time I've been told this but I'm just stunned that this is really what they're telling me. They've done all kinds of tests and he has been tried on one med for this: Topamax. That's all they can do? Really? More about this in a bit.

Today I took Ricky to the dental school at UCSF. His regular dentist referred us there because they were uncomfortable treating him with all of his meds and medical history. (The dentist he's had for years never had any problems with it, but whatever.) We met with a very nice dental resident (and his pushy attending) and went over a thorough history. Ricky had x-rays and a cleaning. No cavities! The dentist was actually shocked that Ricky had no cavities, with his very dry mouth (due to CF or meds, not sure which), poor dental hygiene, and congenital lack of enamel on some of his teeth.

So, the plan is for us to go back there in a few weeks for Ricky to have four of his permanent teeth pulled out to make room for four other permanent teeth that have no room to come in. Once that is done, he can have orthodonture. That's another fun thing to come... Do we pay out of pocket for ortho stuff down here, or do we try to get Medi-Cal to pay for it under medical necessity and do it through UCSF? That would mean going up there every time he needs and adjustment, which would be a pain in the butt. It's an hour away and well, it's in San Francisco, with lots of traffic. Guess we'll see.

As you can see from the picture, the boys and I took the opportunity to do some sightseeing while we were in San Francisco today. That's them on Lombard Street, the crookedest street in the world. I have to say, I was very impressed... We all walked all the way down the crooked block... And then we all walked back up. Ricky hoofed it and made it to the top a good five minutes before Andrew and me. Andrew and I were huffing and puffing and taking breaks all the way up. The kid with lung disease made it up there first! Go Ricky!

Okay, here's the last thing. I think it's time to get a second opinion about Ricky's dizzy spells. It has gotten to the point that he has been knocked out sleeping most of the day 3-4 days per week. He can't stand in lines for long. He has decided to quit soccer because he can't make it through a single game without feeling like he's going to fall over.

So my question is... Aside from Stanford, where are the best/most knowledgeable pediatric neurologists in California? I'm willing to take this to southern California too. I am trying to tap into the knowledge of my friends out there who might have knowledge of these sorts of things. Please put your feelers out and spread the word. Ricky is going to high school this fall. He can't keep dealing with this stuff! We need to find an answer!

Thanks everyone. :)