Updates

Things have been busy for Ricky. He has had a number of absences from and short days at school due to dizzy spells, migraines, and fatigue. We still don't know what's going on with all of this. Migraines do explain some of the symptoms he has been having, but not all.

Ricky is getting a one-to-one aide at school because he's been having trouble adjusting to high school and its routines. He has been trying very hard in school, though, and his favorite class is 3D design.

Most recently, Ricky had some teeth pulled. He had four (adult) bicuspids that were crowding his mouth and making it so that his adult cuspids could not grow in. He had the right ones pulled several weeks ago, and last week he had the left ones pulled. The extraction on Wednesday of last week were very difficult, involving the dentist having to dig them out of his gums. Ricky got stitches and was in a lot of pain. He also developed a fever and we were scared he had some sort of infection. The dentist and pediatrician conferred and Ricky was started on Septra. By the weekend he was doing a lot better and he was back to school today, I am happy to say!

We've had some close shaves with bowel blockages lately, including an ER visit. He's back on Miralax now though and hopefully it will continue to help.

For Halloween, Ricky was a Ghostbuster. I'm not sure, but this might be the last time he trick-or-treats. I can't believe he's that old already! (He'll be 15 years old this month!)


Guess that's all the news for now. Thank you all for sending Ricky cards and letters. He still loves to get mail!

Long overdue update (again)

I can't believe it's been almost three months since I last blogged here. So here's a thorough update on Ricky.

Last I blogged, I had just taken Ricky to the dentist up at UCSF. He was supposed to get his teeth pulled several weeks after that.

I took him back in July and that day he fell asleep on the way to UCSF. I went to wake him up when we got there, and his nail beds and eyelids were blue! He got a little oxygen in the dental clinic and didn't end up having his teeth pulled. In fact, we ended up spending the afternoon and evening in the UCSF emergency room making sure he was okay.

So Ricky has been rescheduled and is going to get those teeth pulled next month. We are going to try for doing all three, under only local anesthesia. If that doesn't work for any reason he'll go under general anesthesia. Hope it all goes well.

We spent much of the summer doing summery things... Day trips to the beach, a Weird Al concert, a They Might Be Giants concert, trips to Gilroy Gardens. We had a lot of fun!


At the beach with friends.


At the Weird Al concert.

Ricky also spent a lot of time doing this:



I have been back and forth with the neurologist. Ricky has been to see him a couple of times and is going again this week. Ricky sleeps a lot, has had these absence-like seizures, and the dizzy spells combined with nausea and extreme tiredness, throughout the summer and into the fall. The neurologist offered Imitrex to help with the spells. Ricky's supposed to take them when he starts to feel rotten. We have used a pill once. It took away the headache and dizzy spell but knocked him out for hours. More on this farther down...

So school started in late August.



First day of high school!

Yeah, first day of high school. Where did my baby go? The first week was really rough. Ricky became pretty severely dehydrated on a couple of occasions. It was a really hot week. I took him in two flats of bottled water that's kept in his special education classroom for him to use as much as needed. I also bought him some Gatorade more recently, because water may not be enough.

He has also had some neurological issues... Sleeping or passing out and becoming unresponsive. Two times were serious enough that the school personnel called 911. The first occasion, I was able to rouse Ricky and he did not go to the hospital. On the second occasion, I was up at Stanford with Andrew at an appointment and the school nurse called to report that Ricky was experiencing nausea and dizziness. I thought it might be a migraine but I couldn't get there very quickly. As happened on the first occasion, an ambulance was called. The second occasion, I couldn't get there on time and he was transported to the local emergency room. A CT scan and blood tests were done and they couldn't find anything wrong.

We are going back to the neurologist this week and I am hoping we can get to the bottom of things. This is so frustrating. I am also meeting with people from the school this week to talk about a plan.

Ricky started the school year in mainstream 3D design (which was called crafts when I went there -- yes, to this same high school), mainstream Algebra, and mainstream PE. As of this Monday, he will be moving into a math class in his special education class, and adaptive PE. The Algebra class was way too fast paced for him, though he really did try to make it. He was apparently making a great effort. The PE class is made up of way too many students for Ricky to get the help/accommodations that he needs so he is transitioning into adaptive PE with another student in his special ed class. These sound like good solutions.

This month, Ricky saw the gastroenterologist and the pulmonologist. He has grown a bit taller and put on some weight -- he's 5'3 now and around 100-101 pounds. Tall and skinny. He does eat well so hopefully we will see more some improvement in his growth; his growth curve has flattened out and dropped within the past several years.

Pancrecarb, the digestive enzyme that Ricky has been taking for many years, was un-approved by the FDA this year -- apparently for no reason except for it being at the request of the Cystic Fibrosis Foundation. This left us with a quandary: What enzymes should he take? We ended up going with Creon, which he took for about five years starting with his diagnosis right after birth. Well, this time, in ways I will not enumerate here to save him some embarrassment (and since I've already Twittered about them), these Creon enzymes are not agreeing with him. He actually missed two days of school. The nutritionist at the CF clinic has offered up several possible solutions and so far they are not working. So we are hanging in there, hoping that at some point the FDA will re-approve Pancrecarb.

The pulmonology (CF clinic) appointment went great. Ricky's lungs are sounding and performing great. His growth, as mentioned, is going well. Hooray Ricky!

We go back to the pulmonologist and gastroenterologist in December.

Ricky's bipolar disorder is currently stable. He is due to go back to the psychiatrist. This summer he again attended camp for bipolar children and teens and he did great. He also made a new friend with whom we've had a couple of visits -- including a trip to the Palo Alto Airport Day last weekend... Ricky, Andrew, and Ricky's friend got to ride in a small plane, and had a blast! Here's a picture.



So I guess that just about catches us up. I promise not to take so long before I update again!

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. :)