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. 

World Arthritis Day!! 2012

Well, today is World Arthritis Day!  In the past I would see such days as World AIDS Day or Diabetes Awareness Day.  There would always be some ribbon associated with it.  You know the ribbon that is a different color depending on what the illness is. Well, for the first time ever I get it!  I really get it.  It doesn't matter what the color is but what it represents.  The fact that we all put on a certain color doesn't matter.....it's the fact that we had to consciously think about Arthritis while we were putting it on.

If you read other blogs like mine you have read others complain about how Arthritis kinda gets the shaft.  It's not that we don't feel like Breast Cancer Awareness, Cystic Fibrosis or AIDS is important....it is but we would like to be heard too.  In a weird way, arthritis isn't as popular as other diseases out there. Lets face it....when have you ever seen a well known super star on a talk show in tears talking about their loved one with arthritis.  Or watched a three minute commercial that brought you to tears because it reminded you of an important woman in your life that you have lost.  Plain and simple people just don't talk about arthritis.  Why?

Arthritis affects millions of people in the world.  If affects more children than many other diseases combined. Many arthritis patients have to take chemotherapy to treat their symptoms.....Alex does. Others have to go to Cancer and Dialysis Centers or hospitals to get infusions that take up to 8 hours to be pumped through an IV and into their bodies. Alex is only a couple steps away from this if her body doesn't go into remission soon!   Just like Cancer, Arthritis can spread into other areas of the body if not treated correctly or quickly enough.  And, just like Cancer there is a chance it could go into remission.  But, did you know that it can also be life threatening....just like Cancer? Yet people still associate arthritis as something their grandma has.  It is much much more than that friends!!

The goal of myself, my family and pretty much every parent of Juvenile Arthritis and of course the Arthritis sufferers themselves is AWARENESS!!!  I want there to be a 6 hour concert/telethon on tv with all the hottest celebrities out there.  I want to open a magazine and see a BLUE ribbon and a pair of hands that talks about how important funding and research are. I wan't to see pictures of beautiful children with a simple line that says "Kids Get Arthritis Too" underneath.   I want fundraising walks and runs that draw thousands and make millions!

So today on World Arthritis Day I did all I could.  My family and I wore our blue, we made cookies with blue frosting to hand out to friends, I wrote about Arthritis multiple times on my facebook account, my twitter and even Instagram.  I have done all I can for today but I am not finished. With the help from all of us we can bring a bigger awareness to arthritis.  Lets make it just as well known as any other terrible disease out there so that we can get help!  We need help by more research, more medicines, more doctors and bottom line more money!  Will you help me do this?  Together we can!!

Finally, I leave you with pictures of family and friends we love!  They chose to wear blue today for Alex but also for all of you who suffer out there.

My brother Mike

Michael and Matthew Lim

My sons best friends

My cousin Sue

Chris Cloud

A JA friend of ours

My husband Ben who sent this from Georgia

while on his business trip......after hours!

My cousin Tricia and Aunt Anne all the way from 

Tennessee!

My cousin Lynne also from Tennessee!! 

Alex's hand....swollen but proud to support! 

Alex brought cookies and coffee cake to school and 

received about $6.00 in donations!

I also had notes from friends on my facebook that did not post a picture but did wear blue.....

Ceci Mason, Heather Craig, Sara Cloud, Jody Mitchell, Michelle Nagelvoort and my mom Sue Barnes! Let me know if I've forgotten anyone!

Getting Committed

No, I don't mean getting committed to the hospital.  I mean getting asked to join the San Diego Arthritis Foundation Committee.  What does that mean?  Well, to be honest I am not sure.  What I do know is that this "committee" meets once a month and talks about upcoming AF events.  I'm sure there's a lot of planning going on too.  

So, to be completely honest when they asked me I recoiled just a bit.  "What? You want me?  To do what exactly?  Will I have the time?".  All these questions went on in my head but then I thought about it.  There have been so many signs and pushes into this direction.  I truly believe everything happens for a reason. It started quite a while ago when the online AF approached me about writing a blog for their site....which I never did.  Then my doctor mentioned that I should attend different AF events here and there and never went.  Then Alex gets picked by the AF to be their honoree.  Then I get the email asking me to make this commitment.  What if GOD....yes GOD is trying to tell me something....lead me somewhere.  So...I said YES!!!  I will join the committee...ha ha!!  

The way I look at it, being a volunteer benefits them and myself and our family.   When your child suffers from something you feel very alone.  Even though my previous post was all about my support system you still feel like no one truly understands......unless they are going through the same thing.  I need my old friends to keep my life as normal as possible but I also need new ones to make me feel whole.  Over the weekend I had the chance to go to an Arthritis Foundation event.  A symposium focused on Juvenile Arthritis.  There were about 20 families there.  It was so nice to be in a place where I could walk up to just about any of them and talk about our journey and know that they truly understand.  It was so comforting.  

Being part of this committee will enable me to not only raise awareness but hopefully gain some new life long friendships.  Hopefully I can help the foundation with my desire and drive to get the community together and support each other.     So yes please....commit me!!!

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!

Beauty Rest or Extreme Fatigue?

Hello friends.  Hope you are all having a great summer!  It has been a very mild summer here in San Diego.  The seasons really are changing!  We have not used our A/C once this summer which is really crazy!  Hey, I'm not complaining....I love a breezy 74 degree day like this!!

The girls start school in a week.  I'm not looking forward to it at all.   Carpooling, homework, early bedtimes and oh yeah homework aren't for me!  But, it is what it is.  Alex will be a high schooler!  9th grade!  I remember 9th grade like it was yesterday.  My first boyfriend, lockers, Friday night football games, dances, etc.  I am so excited for this time in her life!

Kiersten will be attending the same school but entering Middle School. It's a K-12 Charter school.   My youngest Ryan will still attend the elementary school down the street.  He will be a 4th grader.  He has the same teacher that Alex and Kiersten both had so that will be nice.  We really like her and she knows our family well.

Alex seems to be doing well......that is when she is not asleep.  I have never seen someone sleep as much as her.  I think what has happened is that her sleep times have been  turned around.  She is staying up so so late because she can't fall asleep but then she sleeps all day.   Last night I told her to go to bed at 11 pm and as of right now, 11:44 am she is still out.  I have gone to rouse her a couple times and she can hardly keep her eyes open to talk to me.

I have chatted with a few other RA moms and they all say their kids are the same. It could have to do with the fact that her body is constantly attacking itself, or the meds, hormones or that she simply needs the sleep.  I told her we need to start keeping a log so that we can see if there is any pattern to it. When she is awake she is fine.  She is full of energy and  happy.  I guess the reason it concerns me is because it seems to be getting worse.  I don't know how she will be able to sit through a day at school let alone come home and do homework.

Her appointment is in a couple weeks but I am hoping to get it moved up.  I will be sure to let you know.  So, bye for now.  Have an amazing week and I hope that wherever you are, you are able to get out and enjoy some great weather!!  Happy Summer!!

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!  

Coming Soon.....

Wow, I have had so many new visitors in the past 24 hours!  This is so exciting!  Thank you all so much and welcome!!  
So, a while back I was having a conversation with Alex about her arthritis and her involvement in it's community.  You see,   it's all so new to us and we were not even really aware of what was out there for her.  So I went searching on the trusty internet and yes I found some information but  I wanted to find other moms, other teens, other experiences of what worked for families and what didn't, advice on what to tell your friends when they ask why you have missed 12 days of school already and why your mom has to give you shots......I just couldn't find what I was looking for.


So, it got me thinking... there has to be more families, kids, moms, grandparents, teachers etc out there who feel the same way.  This illness is just as serious as some other highly talked about ones yet not many people know about it.  I started this blog when Alex was first diagnosed to keep in touch with my family to keep on top of how Alex is doing but then I thought....why not expand this and reach others who need help and answers too.   


I kinda left it up to Alex....after all she is the one with arthritis not me.  Well, she wants to start a blog/website for other teens dealing with this. It will be a sub blog attached to this one where she will write about topics related to being a teen with arthritis and other fun stuff too  She is so excited about it.  She is starting with a video greeting/ q & a series.  I will post the video here when she is finished but for now she has a request for all of you.....


Please leave a question in the comments for her....it can be whatever you'd like....about Psoriatic arthritis, what it feels like, what she wants to be when she grows up, favorite tv shows etc.  You can also leave topic requests.


Your support in this means so much!  By the way, I have also been in touch with some great ladies at the National Psoriasis Foundation and we are very excited about doing some great things with them in the future.  

Its Been A Year!

Wow, I can't believe it's already been a year since we found out about Alex's arthritis!  I'm sorry I don't update this blog more often but there hasn't been much to update......until today.  

Alex had a check up with her rheum doctor today.  As of her last appointment things seemed to be moving in a good direction.  Her swelling looked much better and we were told to just continue with her meds.  I didn't attend her last appointment (which will never happen again) and apparently the last MRI that she had had was not in her file when Ben met with her.  Well....today when I took her,  the doctor was sad to see how swollen her hand had become again.  I mentioned that it was especially disappointing since her last MRI was showing improvement and that's when things got a little crazy. I guess she thought that I had never taken her in for that MRI. The doctor seemed to know nothing about this last MRI and went scrambling to find the results. She eventually did find it and seemed so confused why she didn't have it at the last appointment. 

So she begins to read the findings to me and not only was there an increase in inflammation in the joints we already knew about but now there was a problem in her knuckles...it seems to be moving up her hand. 

So based on these new findings the doctor now wants her to start Enbrel (the dreaded shots).  She seemed very confident that this medication will stop the progression of her arthritis and hopefully even get her into remission.  For now she is to continue the Methotrexate as well. She said that once we see that the Enbrel is working we can start tapering off the MTX.  

My next step is finding out how much the meds will cost (apparently it can be up to $2000 a month without insurance).  Luckily we do have health insurance but it could still be pretty pricey.  The doctor did mention some sort of  offset that Enbrel will provide you with if you are a new patient so she is working on getting info on that for me.  Once we actually have the meds in hand Ben and I will have to go attend training on how to give the shot to her.  I have read and heard that it's not that hard and is probably more difficult for the parent than the child.  Still this was my worst case scenario so I am not too happy about any of it.  I know things could be much worse so I am just trying to be thankful for that. 

Other than that life is pretty good.  We are in full school mode and the kids are already looking forward to the holidays ahead.  It was funny....when leaving the docs office today she said "Have a nice Thanksgiving" and I looked at her like she was crazy.  She then pointed out that our next appt would be in December.....yikes!!  

Alex and a friend at a Halloween church event. 

So, just in case it is another few months before I post again....Happy Halloween, Happy Thanksgiving, Merry Christmas and Happy New Year!!!!   

MAY??? What happened to Jan, Feb, March and April!!!!!

Wow, time is truly flying by!  So much has happened since a few short months ago.  Lets see...well there was Easter, four birthdays under this one little roof (me, hubby, Alex and Ryan),  a great weekend away with Alex at the Revolve Tour (more on that later), The Royal Wedding (ok, this wasn't MY life but still fun to watch) and Osama.

Where to begin.  First and foremost an update on Alex since after all this blog is about her!  Ha Ha.....she is doing great.  Her blood labs continue to come back clear and her new MRI that she did in March came back fine.  Unfortunately I was sick and did not take her to her last appointment so I had to get a report from Alex and Ben (my husband).  For the most part the relay of information was great but what I really wanted to know was did the MRI show any less swelling.  Note to self....call Dr and ask!   What we did learn is that as of now the doctor feels that the Methotrexate has started to work.  She felt visually the swelling has gone way down....which it has.  She did not feel that it was time to start Enbrel shots which was the best news of all.  So, we are just back into status quo I guess.  She will continue to take MTX every Friday and go in for regular blood labs.  Her doctor appointments have been changed from monthly to every other month which is nice.  She has an appointment next week for another vision test to just be sure everything looks good and that's it.  I'm happy to not have much to report.

We had a great weekend back in April at the Revolve Tour.  If you have a teenage daughter I highly recommended it for next year.  Basically it is a  Christian concert/conference.  This years theme of the tour was Dream On.  So lots of the talks were about following your dreams until the end, never to give up no matter what. God has a plan for all of us and he will lead these young girls to where they need to be.  My favorite part was the music.  We were lucky to see Hawk Nelson, Britt Nicole and Jamie Grace.  All of them are amazing.  We had a very special moment thanks to my cousin Karen.....she happens to be friends with Britt so we got to meet up with her.  The girls and moms were so happy.  She is an amazing singer.  Here is her website if you are interested.   Thank you Karen again for such a fun time!  Here is a link to Karens website too :)

Ok, ok...enough of that!  I need to go and take Alex to youth group.  Thanks for reading and take care!!  Happy May!!!

Arthritis and Rain Don't Mix!

I have  heard people complain about achy joints when the weather gets bad but seeing it happen is painful for me!  This morning Alex had a pre-scheduled doctor appointment but while waiting in the waiting room I decided to take a new picture of her hand.  I was so surprised to see how swollen it was!  It didn't take long for me to put two and two together.....it's the weather!  Not only did her finger joints look red and painful but her knuckles were no where to be found.  The top of her hand is swollen and puffy. 

The doctor ordered another MRI to see if there is any progress that she could not see through the swelling. 

 If the swelling is the same or worse then we will be adding the dreaded Enbrel.  Now....this is only dreaded because I (or Ben) have to give it to her in a shot! I know its not as hard as it seems and that I will do just fine but who wants to have to give their child a shot.....EVER! Here is a little info on Enbrel for those interested.  

Enbrel is used to relieve the symptoms of certain autoimmune disorders (conditions in which the immune system attacks healthy parts of the body and causes pain, swelling, and damage. .Injection may decrease your ability to fight infection from bacteria, viruses, and fungi and increase the risk that you will get a serious or life-threatening infection.

As always thanks for the prayers.  I will update you when anything changes.  If you or someone you know has experience with Enbrel I would love to hear about it.  My neighbor Shelly is currently on Enbrel and has nothing but great things to say about it so that is comforting.  

Super Quick Update

Alex is on day 8 of recovery today.  It was also her first day back to school.  I let her sleep in a bit since she has been getting up at about 9 am most days.  I also went in and talked to the school nurse about her restrictions and that if she got too tired or in pain to just call me. She has texted me to tell me she is tired but no pain was mentioned. She really did not want to go this morning but I expected that.  I wouldn't want to go back either.  She has been in heaven (and yes pain) laying in bed watching tv, eating yummy things and getting lots of extra love and attention. Its hard to give that up for school and homework!!

So, now that this is behind us we will be facing her next challenge that unfortunately will never go away.  Her Psoriatic Arthritis.  There is a lot of the unknown ahead of us but we will get through it just like we did this. 

I am still looking to connect with other families with children living with PA.  I have several great friends that have kids with JRA and have received some great information from them.  It would be nice to kinda know what to expect for her future.  So, if anyone is reading this that has a child with PA or was diagnosed as a teen with PA please contact me.

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!

Last Day Of Summer

Today is our last day of summer break!  Ryan and Kiersten go back to school tomorrow...Alex has already been in school since early August.  As much as I am looking forward to my nice quiet days I am dreading the homework, early morning craziness, evening bath chaos and oh yeah...homework!
We spent the weekend up in Ventura going to my cousins birthday party and staying with my aunt and uncle.  It was lots of fun.  It was just what we needed after a crazy week of stress!  In fact most of the time we were there I had totally forgotten about Alex's new illness. 

She seems to be fine, just a bit tired.  I was surprised that she did not want to join us at the pool today.  She said that she just felt too tired to go.  Not trying to put too much into it.  Going out of town and traveling can be a bit much sometimes. 
She had her school dance on Friday night.  She had an absolute blast with all of her friends.  She did complain the next moring a bit about feeling sore but not too much. 

I have been doing lots of research on her type of arthritis.  I wish there was more info out there on being diagnosed with it at such a young age.  I guess that just means that I have to be the one to have a great blog full of information for parents in the future.  Not sure if I already mentioned it but I was contacted by The National Arthritis Foundation about hosting my blog at their site.  I am honored and will be doing that soon.  I just want to be a bit more educated before doing so.  I will let you know when it happens.

I guess that's all for now.  Lots to do today for getting the kids ready for school tomorrow!! Hope you are enjoying your holiday weekend!

Above is Alex on her first day of school!!

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! 

Reality

When I woke up this morning I quickly ran through what was on todays to-do list.  Like most days it consisted of get up, get Alex ready for school, laundry, work, grocery store etc.  Then all of a sudden it hit me....my daughter was diagnosed with a chronic illness yesterday!  It was such a weird feeling.  Like someone dropped a pile of bricks on my chest. 

Like I mentioned yesterday the best thing we have going right now is that Alex is pain free.  She does not feel ill, she does not look ill, she does not have to take any medication at the moment.  But, she still has a chronic illness. It's hard to know how to feel.  I feel sad for her and selfishly for us too.  As much as I feel optimistic about how far treatment has come in the past few years I feel doom  on the horizon.  She may get on a great medication and never have a painful symptom in her life. Or, things could be very bad.

All I can do is stay completely optimistic and positive for her.  I can pray, comfort and love her and that is what I plan to do.

As far as Alex goes, she is 12.  She is more worried about her Junior High dance tomorrow night than this stupid thing that has given her big knuckles! She told me yesterday that she does not want to know the extent of what could happen to her if the illness progresses.  She said she just wants to take it all in as it comes and that is what I will try to do too.

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!