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. :)

Ricky's week

Ricky went to the pulmonologist this week for a CF checkup. His O2 saturation was down just slightly, he'd grown a tiny bit (but his growth curve is still flat), and his spirometry looked great. He's still got the end of the sinus infection. He's going to start on Periactin again. It's supposed to make him have a bigger appetite. He was on it for a couple of years a while back and it never seemed to do anything, but we'll see what happens this time.

A couple of nights ago, Ricky had what was clear to me to be an absence seizure. He was sitting up watching TV and doing his breathing treatments, and I went over to give him his next nebulizer. He didn't respond to me. Then I noticed that his eyes were open but rolled back in his head. I thought maybe he'd gone to sleep but it didn't make sense because he was sitting straight up. Plus, he had had a 5-6 hour nap that day and by rights, should not have been sleepy even though it was 10 at night. About a minute later, he came out of it and asked Andrew and me what had happened. He was pretty confused and it was clear now that he had *not* been sleeping.

I called the neurologist's nurse yesterday (well, Thursday) to report the seizure. She has yet to call me back -- which seems pretty irresponsible. I want to know what happens next. Change meds? EEG again? Guess we'll wait and see.

The graduate

IMG_5668_cropped
Originally uploaded by Beckerbuns

Thursday of last week, Ricky graduated from middle school! It has been a long, hard road, but he made it. He graduated with 300 classmates. On Saturday we had a graduation party at the local pizza joint.

Last week, Ricky also visited the gastroenterologist. He has grown a little but his weight is basically the same and his growth curve has flattened out. His lungs sounded great, though, even though he has been battling a sinus infection.

Tomorrow it's back to the pulmonologist. Hopefully all is well. Next month he has summer school and bipolar camp.

Sick

Ricky is sick... He started with a cold on Memorial Day and it went to sinus infection and then double ear infection. He is so congested and miserable and he has been out of school all week.

I got him to the pediatrician Friday. I am not crazy about this pediatrician. She usually writes us off, saying "Oh, it's viral." This time she took us seriously and prescribed Bactrim. His O2 sat was down to 95 (low for him) but apparently his lungs sounded fine! If he's not doing better by Monday or seems worse, we need to call again.