A note from my teachers

Ms. K and Ms. C write: "Sebastian has completed all his counting 1 - 10 activities and will now be moving on to counting 11-20. Yay! We are so proud of him. :-)"

Celebration!!

The doctor took me off all of my medications!! They are hopeful that I might be "one of the lucky ones", for whom the disease goes into remission indefinitely after one episode. Let's all for the best!

Hallelujah!!

Preschool playtime

Note from my teacher: "Sebastian loves playing with the dump trucks. As soon as we get outside, he gets the dump truck and starts pushing it all around the structure with J. :)

Good rheumatology appointment

I have successfully tapered off all of the prednisolone steroids and am still moving around well. The doctors are keeping me on what they consider a low dose of NSAID (5 ml naproxen), and ranitidine (stomach liner) so they can be cautious with me. My labs are trending improvement… not completely back to normal, but definitely much better. The doctors are pleased with my progress. Let’s hope that I can be completely medicine free soon! In the meantime, my moon face is slowly waning and I am practically back to my regular skinny self again.

I love the Beatles!

Better than karaoke is Beatles Rock Band! Yellow Submarine is my favorite song!

duCK!

My speech pathologist Shelly and I have been working hard in speech therapy class. Now that I am very talkative (at home at least…), we are less focused on getting me to speak, but rather, on working on my pronunciation of “k” and “g”. These syllables both require that I open my mouth really wide in order to say them. Typically I “front” these sounds, substituting a “d” sound instead of the “k” and “g”. My Mom believes that an arthritic flare in my jaw was attributing to my difficulty making these sounds. Therefore, as the arthritis improves, my speech will continue to improve as well. Well, today I actually said “duCK”! (instead of “dud”)! What progress!

It's a Go

I am halfway through my prednisolone taper, and still doing well. My doctors have given me the go ahead to keep tapering down the dose by 0.5 ml every 10 days until I'm completely off it. Woot!

Tapering off steroids

I am moving around well and not showing any hot inflamed joints. Drs. Lawson and Milojevic are pleased with my progress, and are recommending that I start tapering off the prednisolone steroids, 0.5 ml every 10 days. When I am only taking 3 ml in the morning, we'll have another appointment to reassess. Woo hoo! I’ve been so chubby recently, I can stand to lose all the water that I’ve been retaining due to the steroids!

The Mystery Case and the Diagnosis

The following was written May 2010 in honor of Arthritis Awareness Month.

After 6 weeks of being ill with a “mystery case”, including a week long stay in the hospital, I was diagnosed with Systemic Onset Juvenile Rheumatoid Arthritis, an auto-immune disease that is characterized by high fevers that only appear in the afternoon, evanescent rash, and joint pain. The biggest risk from this chronic auto-immune disease is permanent joint damage and disability. Juvenile Rheumatoid Arthritis affects 300,000 kids in the U.S., of which 30,000 are cases of SOJRA. The following is a detailed account of our journey to this diagnosis in hopes of increasing awareness of juvenile arthritis so that we can find a cure, and to share our experience with this disease for people seeking information about it.

It all started with a 102.6 fever on the afternoon of Thursday, September 10. When my temperatures hit 104 the next day, the doctors ordered lab work done, but believed that it was a virus that would go away in a few days since I had no other obvious symptoms. However, I woke up Saturday night so feverish that my bed was soaked from head sweat. All I could do was moan softly, “Mommy. I – want – Mom – my” continuously. I was completely immobilized.

When I returned to my pediatrician on Monday, my fever was still over 102. She said I didn’t look like a septic child, and still believed it would be a virus that would go away. The lab results were not impressive. Could it be roseola? Let’s all wait and cross our fingers. So we went home hoping that the fever would break in the next day or so, and the telltale roseola red cheeks would appear. In the meantime, I was not moving, let alone walking, and needed to be carried around everywhere. Isabella commented that I was not moving my left leg at all… At the time Mom thought it was because I was feeling weak due to my high fever. I was eating little.

On Tuesday, 5 days after my fever first appeared, a red rash popped up on my face. Hallelujah!, thought my family, it is roseola, and I’ll be back to my normal self soon.

But I wasn’t. The rash went away as quickly as it appeared. By the next morning, the rash was gone, but my >102 fevers were still soaking the bed with my head sweat. The fever was barely being controlled by medicines. My dad had to put a towel under my head and change it out in the middle of the night because I was sweating so much. I was moaning from feeling awful, not moving, and wasn’t improving at all.

After a week of 102 fevers, the doctor sent us to the ER. My Mom pointed out that my left leg was stiff and I was not walking properly. My pediatrician said I needed to be checked in to the hospital so they can really spend time to get to the bottom of this. Mom tearfully took me to the ER… she has gone one too many times and really hates that place. ER wondered if I might have Kawasaki disease, which can potentially damage the heart if not treated quickly. But I only showed 2 out of 4 symptoms of the classic Kawasaki disease, so they debated whether I had Incomplete Kawasaki disease where you didn’t need to exhibit all symptoms. (???!!) Either way, the doctors had to decide ASAP because the disease required treatment within 10 days of the first onset of symptoms, and it was the 8th day. They decided to punt because they didn’t have enough experience diagnosing Kawasaki, so they brought in two great specialists from infectious diseases… Dr. Lee and Dr. Dubray. They seemed doubtful that it was Kawasaki Disease but they ordered an echocardiogram to evaluate my heart. It was clear. They thought the source of my problem was my non-moving leg, possibly a bone infection, and ordered x-rays. That’s when they broke the news to my Mom that I needed to stay in the hospital at least a week so they could have more time on me to figure this out. Boy, was my Mom bummed out! But the x-rays showed nothing, which the doctors brushed off as saying that x-rays are not very good at showing bone infection but it was a cheap test just in case it might. So they decided they needed to do an MRI of my leg instead, because it was much better at identifying joint and bone problems.

The MRI became a panacea to uncovering my illness, but there was a challenge. Unfortunately, I checked into the hospital on a Friday night. Now, the MRI is on all the time so that is not the problem. The issue was that the support staff was gone for the weekend. I had to be knocked out for the exam. (no doubt about this one…I am already screaming bloody murder when the doctor just walked into the room). So an anesthesiologist, recovery room nurse, etc. were all necessary, and they only came in on weekends for real emergencies. Did they need the MRI to help them decide whether it was Kawasaki Disease and therefore sufficiently urgent??

Dr. Lee ultimately concluded that I didn’t have Kawasaki, so no urgent weekend MRI was to be performed. In the meantime, they started giving me Cefazolin antibiotic to treat me in the most likely chance I had a bone infection. After we started it, my Mom thought that my movements started to improve because I actually bent my leg at one point and didn’t have a fever for the first time in 2 weeks. But that only lasted 24 hours; then the fevers and rash all came back. We’d have to wait for the MRI results, but Dr. Lee was not pleased at all by this. It still didn’t make sense to him.

Then came the nightmare leading up to the MRI. No food after 12 midnight because you need to be “NPO”, i.e. nothing consumed in the mouth for 8 hours, so you won’t barf when they give you the anesthesia. We were told “First thing Monday morning”. But once hospitals decide that you are not urgent, you drop off on the priority list. Then it became, “we’ll squeeze you in, after all the urgent cancer cases that were waiting around all weekend.” Then, “you need to get bumped to later because an urgent trauma case came in”. In other words, we have no idea what time your MRI would be, but you have to wait and not eat anything until we get to you! And so we waited and waited. Boy, was I cranky and super miserable and let everyone know it!!!!!!!!!!! My MRI was not until 3:45 in the afternoon!!! I hadn’t eaten anything since about 8pm the previous day!

The next afternoon (Tuesday), the MRI results finally came in. It showed nothing. There was a debate among doctors on how to interpret the findings, with some believing they saw a little fluid in the left leg, right shoulder, etc. but ultimately, they concluded that it was nothing. Infectious Disease was perplexed. Back to square one. I was officially a mystery case.

This was a difficult day for my parents. It was frustrating and scary not knowing what it was, because all of the more common illnesses were slowly being ruled out. More likely, it was rheumatological, which was a diagnosis of elimination and possibly a lifelong disease. But there was also now presented the possibility for the rare and scary stuff. Oncology started conducting tests, and the UCSF rheumatologists were contacted. (Note: no rheum at Children’s due to lack of funding! @#$%&

Oncology’s blood work showed clear, so it was not likely cancerous. Despite this, the UCSF rheumatologists insisted on a bone marrow aspirate to be 100% sure it wasn't leukemia. The reason being that a potential steroid treatment for my joint inflammation would mask any cancer that I might have. The bone marrow was a requirement before moving forward with rheumatology. At this point, my Mom who had been with me at the hospital every day and night for the last week, complained vehemently to the pediatrician about why I had to be put through all of this when it was more likely rheumatological not cancerous, more anesthesia, the lack of definitive scheduling for these procedures, thus the torture of me not eating all day, me not eating or drinking when I was already completely underweight, annoyance that another IV had to be put in because the last one went bad, etc. My pediatrician was a calming, firm voice that pressed upon how critical this procedure was: “This is his life.”

So once again, I was put on NPO Thursday night, but not sure exactly what time on Friday the procedure would be. While all this was going on, I had been put on round the clock Motrin and my fevers were finally coming under control, and I was slowly bending my leg again. The concession my Mom got from the doctor was at least we might be able to leave the hospital after the bone marrow aspirate, which would be “first thing in the morning”. But my Mom couldn’t take another torturous morning of waiting with me while on NPO, so had to have my Dad sit with me while she took a mental break. When noon came along and I still wasn’t called in, she furiously called the doctor that we were still waiting. I don’t know what my pediatrician did, but 5 minutes later, my Mom got a text from my Dad saying that I was being brought in for the aspirate. I think they called in some people from lunch; it all happened very quickly. The doctors called us while in the recovery room to tell us the results showed negative on leukemia. Whew, a big relief.

My team of doctors were now able to deem it probably juvenile rheumatoid arthritis, and discharged us from the hospital while making follow-ups with UCSF rheumatology. I was put on naproxen, a NSAID (commonly known as Aleve, an arthritic med) and a stomach liner (protect the stomach from having this medicine over the long term.) We also had a follow up appointment with a pediatric ophthalmologist. Certain JRA illnesses affect the eyes as well, and can cause blindness. I hadn’t walked in 2 weeks, but once we got home, I was so happy!! I started moving again, ever so slowly. First walking on my knees, 1 or 2 steps, a little at a time, then back to knees or Mommy holding me.

A week later I saw the UCSF rheumatologists - Drs. Milojevic and Lawson. They indicated that my joints were warm and stiff on the left knee, left and right hands, elbows. My Mom also noted that I hated opening my mouth wide to brush my teeth, and as a result, I was having difficulty producing "k" and "g" sounds. But since I had improved slightly and this was the first appointment, at the time, they hoped that my immune system would get itself out of whack and stop attacking itself.

While some of my movements improved over time, my blood work showed different, with ESR and CRP (both markers for inflammation) both too high. Sure enough, three weeks after I was discharged from the hospital, I had another flare … high fevers in the afternoon that broke through the naproxen, rashes that disappeared as suddenly as they appeared. I was also exhibiting pain and slight swollenness in my hands too. The symptoms now carried on for longer than 6 weeks, the duration before something can be called “chronic”, so the rheumatology doctors officially diagnosed me with Systemic Onset Juvenile Rheumatoid Arthritis (SOJRA).

My next step is 3 ml twice a day of the cortisteroid prenisolone to hopefully control the inflammation, on top of the naproxen and ranitidine that I was already taking. Long term use of prenisolone has many worrying side effects, such as weakening the immune system, osteoporosis, swelling and rapid weight gain. So if prenisolone doesn't work, we'd have to move on to disease modifying antirheumatic drugs (DMARDs), such as methotrexate or biologics. Let's hope we don't get to that point. We hope that the disease can be controlled with prednisolone alone, that the disease will go into remission and not be life long. In the meantime, my Mom is looking into alternative treatments, adjustments to my diet, including lots of Omega 3 (helps decrease inflammation) and probiotics (supposedly good for auto-immune disease sufferers). Thanks to everyone – our family, friends, doctors, nurses, everyone – who have been so supportive through this process.

My return to school after my long illness

I'm so happy to be back in my old routine. The teachers have been sweet about helping me stand up when I need it, carrying me when necessary, and letting me take it easy. Despite lingering pain, I try to do things myself as much as I can. For example, while at school, I insist on sitting on my bottom to go down the stairs. I'm having fun again... My teachers note: "Sebastian had a great time playing outside with J. yesterday. It was so great to see him smiling and giggling. He loves to push the wagon around with J! :-)"

I'm Dee!

...or Three, as you'd probably say it.

A note from the teacher

"Sebastian is working on the pink cubes. He is practicing putting them in order by size and also building a tower. Good job, Sebastian!"

Delirium

Two days at two different train museums, two hours of historical rides, and tons and tons and ton of trains - electric, steam, diesel, big, small, standard gauge, O gauge... Now THAT's what I call a vacation.

Happiness is...

...ice cream with friends.
(Photo taken by Josh)

San Diego trip

Here's me very thrilled to have eaten enough lunch to earn my chips! And the Legoland Miniland trains and Lego Presidential Inauguration at the US Capitol... more details to follow...

A note from the teacher

"Sebastian enjoys working on all the practical life shelf activities. He likes to work on the ice cream activity, sushi cutting activity, and the spooning activities. He also shows a lot of interest in puzzles. He also enjoys working with the sensorial activities."

What a face

I get very pouty when I don't get what I want these days!

Take the A Train

Something I can do all day! I was making the subway train compression sound and the "D-A" announcement notes all week.

See pictures from the New York trip here.

Future goalie

All I want to do is hoard the ball in soccer class!

A note from my teachers

"Sebastian has started practicing tracing numbers 0-3. He is doing a great job tracing and repeating the numbers with the teacher! Way to go, Sebastian! We're so proud of you! :-)"

Off the hook, for now...

...I reached the magical 25 pounds! I'm probably still the lightest 2 1/2 year old out there, but the doctor let me off the hook! Whew!

(and my fontanel's finally closed)

Train crazy

Roped my entire family in on my obsession. Doh - doh! (the way I say train)

Reports from my teachers

"Sebastian loves to keep busy during Montessori time! Some of his favorite activities are puzzles (esp. cars), matching dogs, opening containers, food preparation, and lots of pouring activities. It's so wonderful seeing him have a great time!"

I separate easily from parents. I like playing with all of Isabella's friends. (I'm like their little pet!) I play with tricycles, baby dolls, the kitchen/play house, climbing structure and the slide. Sometimes I eat lunch myself or with the teacher's help, but usually not at all!

No, Ba Ba!

I'm learning that kind of attitude puts me in a timeout!

Star Wars music

I love humming both the Star Wars Main Theme and the Imperial March. I also like listening to it in the car! My Mom has a CD that has 16 different versions of the Main Theme. I like the tune so much, I've been asking my parents to sing it to me for my lullaby at bedtime.

SSDD

I currently weigh 23 pounds 7 ounces, and am 33 3/4 inches tall. I am finally on a percentile - 10% for height! But I'm still below any of the weight charts. You would think I'm emaciated with the story the charts say about me. My doctor is emphatic that I need that fat for brain development, so bring on the ice cream!

Merry Christmas!

Train obsessed

No thunderstorm or rain is going to stop me from riding that Disneyland train! Do-do!!!!!

And I enjoyed It's a Small World so much that I was bouncing in my seat and waving my arms to the music.

See more pictures from the trip here.

Jump!

I'm jumping with two feet!

First 2 word combo

Hey, I said my first two word phrase today! Too bad for my Mom that it was "No Momma"

First speech therapy session

...this better work!

A note from my teacher

"Sebastian enjoys working with puzzles. Once he is done with one, he's ready for another. Good job, Sebastian!"

Toddler personality coming through

I am learning all the important stuff from my sister! How to cling to Momma so she will be overridden by guilt, how to stomp my foot when I say "No!", how to run away from my parents chasing me to change my diaper...

(photo taken by Penny in June 2008)

Every little boy's dream vacation

Excavators! Skip Loaders! Dump trucks! If only every hotel had a construction site like this right outside their window!!

I seemed particularly one track minded on construction trucks and trains on this trip. My Mom realized that I'm truly XY.

More details to follow. Pictures from our Hawaii vacation here.

First Preschool Teacher Conference

My teachers only had positive things to say during my first teacher conference in the preschool today. They said that I was a nice addition to the classroom. I am very affectionate: I walk up to my teachers to hug their leg, or give them a hug while they are changing me. I am very much a boy... the first thing I grab when I enter the classroom is a puzzle with motor vehicles on it. My next favorite thing is a dump truck. I enjoy the practical life activities like taking off the doll's clothes. I haven't started any of my letters yet... one because I just transitioned into the classroom, second because I don't say any words right now! I get along well with the other kids, especially Isabella's friends that I already know so well. A few of the older kids have been taking me under their wing, almost like I'm a pet. My sister reports to my Mom that the kids all like me because I'm so sweet. I'm glad that my sister is in the same room, but I'm pretty independent and have my own activities that I focus on. I'm loving it in the preschool. And although I love story time and the routine of the Infant/Toddler classroom, I got upset during transition whenever they brought me back to the Infant/Toddler classroom. I'm fitting right in with the big kids!

Speech therapy assessment

My Mom took me to a speech assessment today. It was like a fun playdate! Despite the fact that the room had 4 adult strangers, I quickly warmed up to the room because there was a picture of a train on the wall. We played ball, puzzles (one had a really cool tractor!), identified things in pictures. I frequently paused what I was doing to turn around, point to the picture of the train, and exclaim, "Doh doh!" (my way of saying "choo choo train"). We did some activities which I love like filling and pouring, fitting rods into holes, fitting puzzle pieces, drawing lines. When the lady blew bubbles at me, the bubbles were fine, but on the bubble bottle was this small yellow dump truck that I had to point out! Definitely nothing wrong with my eyesight! When I was asked to make a block tower with 13 blocks, I stopped after the 9th one when I saw that the tower start wobbling. I knew it was going to fall! After much coaxing, they got me to put the 10th block on, but down it came tumbling! I knew it! The only thing that I didn't seem so keen on was the pretend play taking care of a teddy bear. Hello, please, that is girly! Can you give me a truck or car or something a little more interesting, please??!

The assessors determined that my problem solving skills are higher than my age, at a 27 to 30 month level. But for expressive language, I am talking at about a 14 to 18 month level! They recommended early intervention through six months of weekly 45 minute speech therapy sessions. They claimed that waiting too long would risk a developmental delay. Kids often act out their frustration from delays in aggression. I hope that this helps me express myself better! Meanwhile, I enjoy saying new words like "backpack" (I like walking around wearing Dora's backpack) and jibber jabbering away. My parents are enjoying my toddler talking phase and are cherishing it as long as they can, because they know that it all changes so quickly and that they'll miss it.

Hiding

I like running away and hiding under the table! Often my sister is my partner in crime.

Transition finished

I officially finished my transition to the preschool. I don't know why it was so slow and my Mom was so worried about it. I LOVE the preschool! I've got Isabella and all her friends who adore me and treat me like their little pet. I was so mad every time they took me back to the Infant / Toddler program! I want to be with the big kids!

First Trick or Treating

...what is this mysterious gift?

Moving on up

...to the preschool!

25 month follow up

My doctor was still concerned about my speech delay, so she is sending me to speech therapy. My fontanel still hasn't closed up but the neural surgeon said that anterior fontanels often take four years to close up. I gained a pound in one month, so I am growing!

Run, Sebi, Run!

Here I am being the "Muh Train". (I say "Muh!" a lot...) I run a big loop from our family room, through our kitchen and playroom. This evening, I ran this circuit for about 20 minutes straight! My head was soaking wet from sweat afterwards!

Ditto

...a third birthday celebration, this time with my Mom's family. I love it everytime!

My own language

Well, my parents keep trying to get me to say words, but I am just such a happy-go-lucky mellow dude that I am oblivious to their efforts. I do have my own language. Here is a sample:

mama - mama, hold me, pay attention to me!, hey you!!
NO!! - no, mine, get away from me, haha I can copy my sister!
Yo - yes
muh - more or milk
mup - up
ne deh - i want that
wazaa - what is that
huhuhuh - dog, hot, steam engine
doh doh - choo choo train
beep beep - car
smack lips - fish
pbbb - horse
baba - chicken

I've also been singing "Ee-i-ee-i-o" part of Old McDonald, Twinkle Twinkle Little Star, and my circus train song. Well, at least I can get the rhythm right, even if I can't carry the tune quite yet.

Apple harvesting time

I smell apple crumbles, yum yum yum!

2 - 3 - 4

What a fun joint birthday celebration with Rowan and Eliana!

Negative?

Three days after my second birthday, I can't stop saying "No!" I woke up today and for everything that my parents ask me, I've been saying, "No! No! No!" It has suddenly become my favorite word! Could this be the beginning of the "terrible twos"?

2 year checkup

I'm 31 1/4" tall and 22 pounds, less than 3% on both measures. Since I'm still not saying many words, the doctor suggested I see a specialist about my ears and hearing. The specialist said I was fine, and told my Mom not to worry about my speech delay, citing that his son had a speech delay and now he is a pre-med at Harvard!

First haircut

...enough snickering about my mullet baby hair. Got my first haircut today!

I'm 2!

a-Ma in town

I wish she would be around all the time to play with me!

Feed me

An awesome behind the scenes Oakland Zoo tour!

Teacher assessment

Now that I am almost 2 years old, I can technically move up into Isabella's classroom. However, my parents are concerned because I still don't say many words. So my Mom had a conference with the teachers who said but for the speech, I am really smart! I can do and complete all my activities from start to finish. I know what is expected of me, what should be done, and always clean up. I seem to understand everything that people say to me, and respond and follow directions well. I recognize what is right and wrong, and am very well behaved. I seem to be trying to say the words but can't get them out right now. Well, they'll keep trying but I'm doing it at my own speed...

Overhead throwing

My new milestone!

Nice place for a nap

I've found the best places to nap! Here I am catching some zzz's in Montefioralle, Italy; Santorini; Parthenon in Athens; on a gondola in Venice; on a quiet Brooklyn street; Split, Croatia; at Topkapi Palace in Istanbul...

On shore

More details to follow. See more pictures from the Shore Excursions here.

All aboard

I hate this life jacket! Luckily the rest of the time on board the ship was great. More details on the cruise to follow. See more pictures from the cruise here.

Eating well

Pounding down squid ink pasta, having my first gelato and enjoying some red wine....

Biting

Is it new teeth coming out or a sign of affection? I've been leaping on everyone in my family and taking a big chomp. My Mom has lots of little "love bites" all over both her shoulders, and Isabella has a big red mark on her chest!

Italy

Let loose in Verona, and with the villa's "huh-huh-huh" (i.e. dog). More details to follow. See pictures here.