Just a post to say Thank You to all of the wonderful people that donated to Alex's Alliance for the Jingle Bell Run!! 

Eddie and Peggy Kasaba

Anne Kingsbury

The Naglevoort Family

Tricia Kingsbury

Faith Steele

Karen Kingsbury

Luana Wilson

Mike and Stephanie Barnes

Danielle LaCoste

Jennifer Williams

The Lim Family

Shelby Lloyd

The Kane Family

Douglas Gilbert

Justin and Dylan Head

Kim Allen

Carol Gidner

Mr. Cannon

The Rochelle Family

Kathleen Oversmith

Lisa Scott

Barbara Perdue

Cindy Skeber

Noel and Julie Mechelin

Victor Edinian

Tom and Sue Barnes

Sheila Graciano

Margy Lara

Donna Crosby

Carol and David McCall

A special Thank You for all our Alex Alliance team members!  

Tom Barnes

Sue Barnes

Peggy Kasaba

Ed Kasaba

Elizabeth Allen

Sarah Braithwaite

Lori Cripps

Sara Cripps

Madi Estrada

Gabie Hanson

Skylar Mason

Monica McDonnough

Emily Sisavath

Chloe Steele

Faith Steele

I also want to give a huge shout out to the Mason Family who are all coming down to Balboa Park and volunteering for the morning!  They are great friends of ours and their daughter (Skylar=listed above) is a member of Kierstens scout troop. So, as you can see everyone has really stepped up to help us out!  Truly blessed!!

Plus....we are so excited to have my Aunt Anne, cousin Lynne and her girls Courtney and Jessica coming all the way from Tennessee for the event!!

We are so amazed by everyone's support!! This is such an important cause to our family and we love seeing other people getting involved too. 

September

Awww Septermber!  I love this month.....summer is coming to an end and fall is on the horizon.  All the kids start a new year at school with a fresh slate!  The crazy thing is that San Diego just started getting warm!  We had a very cool "summer" but ever since school has started it has been in the 80's!

Other than that we had a pretty quiet August.  Kiersten turned 11 and is having a sleepover this weekend to celebrate with her friends.

I have a weird thing going on....my fingers on my right hand are numb....like all the time.  I went to the doc and she is pretty sure I have a pinched nerve in my neck.  I have to get an MRI and see what's going on with it.

We have a meeting next week at the Arthritis Foundation to go over the upcoming events.  The official Jingle Bell Walk kick off party will be on 9/25 at Road Runner Sports!  This will be her first public event so fingers crossed!! Bottom line it will be lots of fun!!!!

Well, that's it for today.  Don't forget to go here to sign up for the Jingle Bell Walk!!  If you are not local you can always make a donation.....any size counts! You can also search to see if there is a walk in your area and start your own team!!  No child should have to deal with arthritis!

Alex's Bio

We were asked to come up with a bio to send to the Arthritis Foundation to use for a press release and I thought I would share the finished product here.....

Alex Ochoa is a 14 year old ninth grader at Guajome Park Academy.  She lives in Oceanside with her parents Pattie and Ben, sister Kiersten and brother Ryan. She loves the internet, her iPod and hanging out with friends.  There’s just one thing that sets her apart from other teens, juvenile arthritis.It all started in August of 2010. While out shopping Alex noticed how the cute rings at her favorite store wouldn’t even fit over her knuckles. Concerned by the swelling in her hands her mom made an appointment with her pediatrician.

Her doctor suspected it was Lupus or Arthritis and ordered lab work right away.  Even though the labs came back clear her doctor wasn’t convinced and referred her to rheumatologist, Dr. Szer.  After an exam and hearing how psoriasis runs on her dad’s side of the family Dr. Szer was convinced Alex had Psoriatic Arthritis and ordered an MRI.  Unfortunately the MRI confirmed her suspicion.

Alex started with the medication Methotrexate (MTX). MTX is a mild chemotherapy drug used to suppress the immune system.  Due to the dangers of this drug Alex now has to have monthly blood labs done to make sure further damage isn’t being done to her organs. This medicine makes Alex feel very fatigued and nauseas for a day or so after taking it.  This is commonly called a "MTX Hangover" in the juvenile arthritis world.

After another MRI showed that the medication wasn’t helping her doctor prescribed Enbrel.  Enbrel is an injectable medication that is given to her twice a week by her mom. Many people are becoming more familiar with this medicine due to the commercials featuring PGA golf pro Phil Mickelson.  He also suffers from Psoriatic Arthritis like Alex.

After months of being on both medications her most recent MRI is showing a slight improvement. This is a small step but one in the right direction.  The goal is to have Alex’s arthritis go into remission.  Since there is no cure for arthritis Alex will have it for the rest of her life.  But, with the right medication it is possible for her to live symptom free.

Having arthritis has been hard for Alex and the whole family.  The hardest part so far for Alex has been the fatigue.  There are days when Alex will get home from a long day at school and head straight to bed.  Last year she missed over 20 days of school due to illness, doctor appointments or just fatigue.

Her good days are spent acting with her Advanced Drama Group at her school, hanging out with family or friends, catching up on her favorite show Doctor Who and doing art. But without a doubt, anyone that really knows Alex knows her biggest passion is reading.She is hardly without a book and even read the entire Harry Potter series during her 7 week summer break a few years back.

Her parents credit their Christian faith and family in getting them through the tough times. They spent quite a while educating themselves on arthritis and her mom even started a blog (alexarthritis.blogspot.com) to reach other parents out there who are going through the same thing.

The future looks bright for Alex. She is entering her freshman year at high school and hopes to go to art school afterwards.  Her lifelong goal is to someday work at Pixar Studios in the animation department.

Being chosen as the Arthritis Foundation Jingle Bell Walk Honoree has been a thrill for Alex and the entire family.  She takes this position very serious and looks forward to educating her family and friends on arthritis.  She hopes to speak to her classmates, peers and church about arthritis awareness, symptoms to look for and what needs to be done to find better medications and even a cure someday.

She started her team, Alex’s Alliance for the upcoming Jingle Bell Walk and hopes to get at least 50 walkers to join her.  Family, friends, neighbors and even her Kindergarten teacher have already stepped up to say they will join her team. She also has aunts and cousins coming all the way from Tennessee to support her on the big day!

The Arthritis Foundation is a wonderful organization that helps bring support and awareness to this awful disease.  Working with them has been an honor for the entire Ochoa Family.

So excited to share some big news with all of you!!  Alex was chosen to be this years Arthritis Foundation Jingle Bell Walk- San Diego Honoree!!  

We were thrilled when we received an email from the AF  asking us to come meet with them.  We are not too sure what it will involve for sure but it will be fun!!  We have already started a walk team called Alex's Alliance.  If you are interested in joining our team you can just go HERE.http://sdjbr.kintera.org/faf/donorReg/donorPledge.asp?ievent=1021954&supId=362173464

We are so happy to bring awareness to Juvenile Arthritis and help people realize that yes kids get arthritis too!  

Questions

So after that last post I received a few questions for me.  Don't worry....Alex is still going to answer your questions too. I will just post the questions and you can scroll down and read any you are interested about.

• 1.  Do you have Psoriatic Arthritis or Psoriasis? No I don't but my husband and his mom have Psoriasis.  His mom also has arthritis as well. 
• 2.  Does Alex have Psoriasis? No, not yet anyway.  Only 15% of people with Psoriatic arthritis DONT end up getting Psoriais.  
• 3.  Will it ever go away?  Well, her symptoms can go away (remission) but she will have it for the rest of her life. 
• 4.  What's the hardest part for you as a parent?  I would have to say the worry about it all.  You worry if these medicines can be doing permanent damage, about her long term prognosis, what if we lose our insurance and on and on.  But, I would have to say that I have a lot of confidence in her doctor and feel that everything we are doing is the best we can do at this point.  I pray about it a lot too and have our church and friends praying for her all the time. 
• 5.  Will your other kids have it?  We really don't know.  I was just reading that it is not extremely common for siblings to get Juvenile Arthritis.  So, we will just wait and see. 
• 6.  What's one thing that you want other people to know about PA?  I think what I want everyone to know is that yes kids can get arthritis too and it can be very serious.  We are so so lucky that Alex has a very mild case but there are thousands of children out there that are wheelchair/home bound because their disease is so debilitating they can not function.  I had no idea until Alex was diagnosed.  These families need our support through prayers and donations so that a cure can be found! 

That's all I have for now.  If you have any questions for Alex or me just leave a message.  Thanks again for reading about our lives.  It means a lot to me!  

Tomorrow is the BIG day!!

Well, we managed to keep Alex healthy in time for her surgery tomorrow.  I don't know how.  Both Ben and I were down the past week with bronchitis!!  We sent her to my parents house for the weekend to keep her away from the germs and it has seemed to have worked!

We are all anxious to get this behind us.  I have to say I think I am ten times more nervous about it all than her.  Like I have said before....it's not so much the surgery that scares me but the recovery I am worried about.  I have heard that it is a very painful and long (7-10 days) recovery.  But.....Alex does seem to have a high pain tolerance plus she is 12.  Kids seems to bounce back much faster.

I hope to update here daily to let all of you know how she is doing and for any other parents out there that are going through the same thing.  Feel free to leave her messages here because she does check this blog.  Thanks also to all of you for your prayers and well wishes! 

One Week Until Surgery!

So, in one week my baby will be wheeled into an operating room and have her tonsils removed.  I know, so dramatic but I am seriously nervous about it.  I am not worried about the actual procedure but the recovery.  I have heard that it is pretty painful! It's hard to really prepare a child for that.  You don't want to scare them yet you don't want them to feel betrayed either! I have explained it to her somewhat but will tell her more as it gets closer.  She is just looking forward to laying around and watching tv for 10 days!

My other big concern is school!  I have contacted all of her teachers telling them that she will be out of school for at least one week but have been reading online that recovery can be much longer.  According to her doctor she can go back when ever she feels up to it.  I know that some of her teachers are getting work together for her that we will do at home when she feels up to it. 

My last stress is that I will be alone to care for Alex.  Ben is leaving the morning after her surgery day for a 5 day business trip to Washington D.C. I am sure it will be fine but it will be hard not having any extra support.  I will be heading to the store before her surgery to really stock up on all of our needs. We have two other kids who are in elementary school that I will have to get to/from school and help with homework, feed, bathe etc.  

Otherwise Alex is doing fine.  Little aches and pains here and there that I have no idea if they are related to her arthritis or not.  I just keep taking notes of it and will share it all with the doctor next month. 

Doctors and Tonsils and IV's Oh My!!!

Sorry it's been a few days since my last post.  Up until yesterday not much was going on. 

Yesterday we had to drive about an hour down to Rady's Childrens Hospital in San Diego for two appointments.  First we met with the otolaryngology doctor.  This is an ear nose throat doctor who will be doing Alex's tonsil removal surgery.  The interesting thing we learned is that the doctor had heard about some trial studies done that show children with Psoriatic Arthritis do better after they have their tonsils removed.  I explained to him that she has needed them out for over a year due to constantly getting tonsilitis/strep throat and that it had nothing to do with her PA.  I will have to look into the research though. 

Her surgery is scheduled for September 28th.  She is  excited about it because she is looking forward to no school and all the ice cream she wants!  I don't have the heart to tell her that I read in her prep paper work that ice cream is not that good for her because of the dairy and it sticking around her throat.  She loves smoothies and jello so we will try and go with those! I don't really know what her recovery will be like.  The doctor said it will feel like a bad case of strep without the fever making your body hurt too.  She can go back to school as soon as she is off the pain meds at which point she will probably feel better anyway. Best guess in 5-10 days.

Her next appointment was the MRI.  They were sooo nice!  Because MRI's take so long you are often the only patient waiting.  We had a private waiting area with a tv which made Alex happy.  It was good for me since we were 20 minutes early!  Next they brought us into this room with three nurses!  Not one, not two but three.  All being so so sweet to Alex and asking her about school and what the MRI was all about.   Next I notice one of the nurses is getting a needle out and I am thinking "what the H"....turns out she needed to have an IV to inject contrast fluid for the MRI.  Once Alex heard this she turned white and started shaking!  They put her in this cool recliner with special arms on it just for this purpose (putting in IV's).  They also gave her a warm blanket.  After she relaxed she did awesome.  They let me go in the room with her and gave me a pair of ear plugs since MRI's are sooooo loud!  She had to lay in a very awkward position on her stomach with one arm up above her head (superman) and the one with the IV straight down by her side.  They put these huge headphones on her that had a radio station playing in them which made laying with her head turned to the side even harder.   She looked so uncomfortable! The MRI took 50 minutes!  I could not belive it took so long.....I guess with the IV it takes longer. She did absolutley perfect and didn't move an inch the whole time!

We got out of there at 1:30 just in time to rush home to get Kiersten and Ryan (her sister and brother) from school.  But guess what...I got lost!  I have gps on my phone but my phone died (and hubby had the charger).  Needless to say I had to call the school and they had to wait in the office for about 15 minutes for me.  Major Fail! 

So here is what is next:
MRI results in 3 days
Tonsils out on the 28th
Eye doctor 10/4
Rheumatologist 10/5

Have you or your child had tonsils removed...if so please leave me a commnent on how it went, recovery time and what foods you suggest!  Thanks!

Arthritis or Normal Aches and Pains?

So yesterday Alex complained a few times about pain.  The question is whether it was from the arthritis or from exercise.  She only has P.E. twice a week and yesterday was one of them.  Her school has a full gym...it's like walking in to 24 hour fitness!  They were allowed to "work out" yesterday instead of playing a game of volleyball or running laps like we did as kids!  Anyway, she did the treadmill and some sort of solo flex machine.  I am hoping she just over did it.

Her complaints involved her left ankle, knee and right hand (which is probably from writing).  I have noted it and will be watching to see if it hurts again today. 

Thanks to my awesome new followers! Aunt Anne, Barbara Perdue and The National Arthritis Foundation!  If you would like to follow my blog and get updates when I post a new entry just click on the "follow" button on the right hand side.

Have a great holiday weekend! 

Diagnosis Day

Thank you so much for taking the time to visit this website. I decided to start this blog right away to keep track of all the goings on with Alex's arthritis.  It is important with this illness to keep track of everything!  Appointments, symptoms, medications, treatments etc.  It's also nice to have a place to share all that is going on with you so that you can be informed as well as other parents who may be facing this for the first time too.  I have spent quite a bit of time online looking for information and have come up short.  There are many great websites out there like The Arthritis Foundation but sometimes it is nice to be able to connect with other parents out there going through the same thing.  Plus the type of arthritis she has is somewhat rare in children!

So lets get right to it. Alex was diagnosed today with Psoriatic Arthritis.  It all started back in May/June 2010 when she showed me her right hand.  She was concerned with the swelling in her knuckles.  We shrugged it off as nothing since there wasn't any pain.  We figured she had smacked her hand against something or maybe had too much salt in her diet.  A couple months later we were out shopping and she was trying on fun rings and realized that the size 8 ring would not even fit over her knuckles but was too large on her left hand.  Shocked by just how big her fingers had become I called the doctor immediately and made an appointment. 

At this appointment the doctor suggested she had either Juvenile Rheumatoid Arthritis or Lupus and ordered a string of blood tests and an x-ray.  We were relieved a week later when the doctor personally called our home after office hours to tell us that everything was negative.  No sign of it in her blood tests and the x-ray looked fine.  She thought perhaps it was an allergic reaction of some sort.  But...just to be sure she referred us to Dr. Szer, a Pediatric Rheumatologist.

That brings us to today. After a brief run through of family history, medications and symptoms I said to the doctor "oh by the way, not sure if it means anything but my husband has Psoriasis". Without missing a bit she said "she has Psoriatic Arthritis and let me tell you why".

She spent a very long time explaining it all to us.  How it does not show up in blood work, how you can have the arthritis but not the psoriasis, how the fact that my husband and his mom suffer from psoriasis makes it a clean cut diagnosis.

The good and the bad.  The good news is there is treatment available.  The bad news is that it is going to be trial and error for a while until we find the right medication to treat her with.  The good news is that she is currently not in any pain or suffering from stiffness.  The bad news is that there is no cure for it and symptoms  could get worse over time.  There is the chance that this can go into "remission" where no symptoms will be present and other times there could be flare ups where she could be in a lot of pain.  It's an illness that controls you, you never know what the next day could be like.  The plan with treatment is to relieve symptoms and prevent too much permanent damage to the joints.

Our next steps:
At this point she is not on any medication. The doctor wants to do an MRI to check how the joints are doing.  This will help her determined how aggressive she will be with the treatment.
Apparently children with arthritis develop problems with their eyes...specifically swelling in the eyes.  Because of this she will be going to the eye doctor every three months from now on.  Her first appointment for this is Oct. 5th.
She will also be having her MRI on Oct. 4th.
Lastly she told us to plan on visiting her once a month for now. 
So it looks like many trips to the doctor and lots of $$$ in our future!

Aside from dealing with this she also needs to get her tonsils out.  The doctor wants to do it right away so that her new treatment won't interfere with it.  Poor baby!!

If you have made it this far....thank you!  Thank you for caring enough about Alex and our family to read this.  Please keep her in your prayers that she will get the best treatment and won't have too many problems in the future.  All of your love and support means so much to us!!  Please leave comments for her...she would love that!