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!!!

Team Huddle

Today it dawned on me how much the statement "there's no I in team" relates to Alex's journey with arthritis.   Yes, she is the one with the disease but there are so many there behind her to help us get through it.  Let me introduce them to you.....

Family: Yes, of course her dad and I are part of her team and even her brother and sister (sometimes, ha).  But let's not forget my parents Sue and Tom.  Did you know that it was my dad who drove us down to Children s Hospital and stood beside me as I learned to give Alex her first shot.  My mom is always telling me about new things she has learned  regarding arthritis and probably Alex's #1 cheerleader! She even offered to call me every Wednesday and Saturday night just to remind me to give Alex her shot! Amazing!

 My extended family including my brother Mike and his wife Stephanie, my cousins Tricia, Sue, Lynne, Karen and Eddie and aunts Anne, Peggy and uncle Ed...they have all been so awesome in praying for Alex and keeping updated on her treatment.  We love and appreciate them all so much!

Dr. Llona Szer

Doctors & Medical Support: If it wasn't for our Pediatrician, Dr Lauren Choi, suggesting we get a second opinion from a rheumy even after ALL of Alex's tests came back negative we would have never known Alex had arthritis.  Or, we would have found out after much more damage was done to her joints!!  Our next angel was Dr, Llona Szer (pronounced sher or Cher), Alex's rheumy.  Now, we didn't see eye to eye at the beginning and I even left her office in tears once after she yelled at me for not taking things serious enough but boy do I love her now!  Not only is she the Director of Pediatric Rheumatology for Children s Hospital, San Diego but also the recipient of many awards and accolades! Alex adores her and I'm pretty sure the feeling is mutual since she is the one who nominated Alex for the Arthritis Foundation Honoree.  I'm already dreading the day when Alex has to find an adult rheumy....but I have a feeling we will be in touch with Dr. Szer forever!
Alex's team also includes an Opthomologist, dermatologist, physical therapist, and all the MRI tech's, the ones that draw her blood, the nurses and the appointment makers!

Friends & Co-Workers: As the mom of a child with an autoimmune disease I walk a fine line.  One side is living life as if nothing was wrong, all is great in the world.  The other is living in the throws of "why me?", "why my daughter", doctors appointments, needles, pills and frustration.  I try to live right in the middle.  Sometimes I fall over into the dark side and that is where you, my dear friends come in!  The friend that sticks out the most in my mind is Michelle Naegelvoort.  Michelle and I met when her daughter Alexandra (yes you read that right) and my Alex went to school together in K-1 grades.  My Alex left that school to attend one closer.  A few years later facebook arrived along with lots of friends I hadn't seen or heard from in years.  Michelle was one of them!  In fact, except for once in 2005 (i think) we have not seen each other in over 8 years (and she only lives 25 minutes away!).  So it turns out her son Dutch also suffers from an autoimmune disorder, so we have a lot in common.  Our kids go to some of the same doctors and have been on some of the same meds.   It has been amazing to have someone to talk to that has gone through exactly what we are going through and give great advice or just listen!   Anyway, our late night chats on fb mean the world to me and someday we will actually get away for our girls trip to Disneyland like we keep talking about!!

I have other friends too that are always there to support and listen! Girl Scout moms, school friends, church friends...the list could go on and on!

Support Groups: Yes, I belong to a support group....sorta.  There is a group of amazing moms online (facebook) that I have contact with on a daily basis.  The group is specifically for moms of kids with juvenile arthritis.  We are always helping each other with advice, comforting when something is going wrong or jumping for joy when a child finally goes into remission!  We are from all over the world...some from as far as Australia!  I think we would all agree that having this group has been one of the best things that has happened in this journey!  Someday we will have to plan a meet up!!

So, as you see I could go on and on.  My point in all of this is that Alex could not be going through this alone!  Each one of you hold a special position in the team.  You may be the play maker ,the star player, the ref or the one on the bench who gets pulled into the game when the going gets tough!  I can't thank you all enough!  And thank you for being part of Alex's Team!  Now it's time to go beat this!!!

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!!

Hello friends...thanks for stopping by!  It's March now.....we are in the thick of busy birthday time!!  Alex turned 14 on February 25th!  It was a very fun day!  She was in a play through her Advanced Drams group at school.  Afterwards we had cake with her cast and crew!  It was great to see how loved she is!  She did a great job and made us very proud!  This Saturday is my husband Ben's birthday and the following day he and Alex are going to Disneyland to celebrate their birthdays and have a very special daddy/daughter day.  Next week on the 16th I turn 41...and on the 19th my son will be 9! Fun Fun times ahead!  

 Alex is in her 3rd month on Enbrel.  She will be getting her labs done (blood work) this week and has her appointment with her rheumy on Monday the 12th.  At this point I have no idea if it is doing anything.  By looking at her hand you can still see swelling so I think the only way to truly know is by doing another MRI.  I am not sure if the doctor will order one right away or not. 

I was really happy to meet (virtually) some other moms last month who have children with Psoriatic Arthritis.  I even met someone who has a daughter with arthritis without the psoriasis so it will be nice to keep in touch and compare stories with each other.  Her daughter is a bit younger and unfortunately has more pain and symptoms than Alex.  She just started Enbrel so I am praying she gets lots of relief soon!  

For anyone just starting this journey I wanted to get you started with some great sites.  There is a ton of information there for you!  

The Arthritis Foundation-Lets Move Together

National Psoriasis Foundation

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.  

Progress?

Hello and happy February to you!!  This year is just speeding by and we are now entering our crazy months.  Between Feb 25th and Mar 19 four out of the five of us celebrate our birthdays!!  It's fun but always a bit crazy...planning birthday parties, dinners, gift giving etc.  This year has even a couple extra Feb bonuses with a concert on the 17th and Alex acting in her school play the week of the 25th.. Lots of crazy fun ahead!!

 Alex is doing very well.  She has been getting her injections for just over a month now.  You can't really see a difference by looking at her hands yet but I pray it is doing miracles on the inside.  She is tolerating her shots well....no reactions, rashes or rejection of any kind.  She has had some injection site redness and tenderness but that is completely normal.  It has strangely become very normal....me giving her a shot.....just like me giving her a tylenol or something.  She doesn't complain about having to get the shot and my hands no longer shake while giving it to her!  

On a personal note I had a tough day recently thinking about it all.  I know we are so so so lucky that she is not in pain.  She has said that she does feel some stiffness in the morning but not much.  What got me was reading about other patients who have Psoriatic Arthritis along with very severe psoriasis.  Alex does not have  psoriasis at this point in time but the odds are against her....her grandmother and father have it so it doesn't look good.  Ben's ( her dad) didn't get really bad until he was in his 30's.  Having a visible skin disorder can be very damaging for peoples self esteem. I worry that if she gets it before she has had a chance to mature into a strong woman that it could somehow hinder her.  I read stories about kids being teased and tormented because of their skin issues. It just breaks my heart.  All I can do is just pray that she never has to deal with any of it and if she does get it that she handles it with grace.

Did I mention that her birthday is February 25th and she will be 14!!  Wow....unbelievable!  She is becoming such an amazing young woman!  She still loves reading, theater, Disney and oh yeah reading! She is beyond excited for the new Hunger Games movie coming soon!
Well, thanks for reading another update! As always please leave a comment or note for Alex....she does read them.  Take care!!

Starting Enbrel

So, the doctor has decided to start Alex on Enbrel shots.  It took 6 weeks to get her medicine in our hands.  I only mention this in case you are facing the same thing.  First the insurance company denied it so my doctor fought for me to get it approved.  We also applied for financial assistance through Enbrel and got approved for 100% coverage for the first 6 months and then we only pay $10.00 after that.  Once that was all arranged it took about a week to get it in our hands.
So, the next step is meeting with the nurse to have her teach me to do shots.  I'm really praying that this will put her arthritis into remission!  The doctor really seems to think it will.

Other than that we are enjoying the holidays.  The tree is up, the house is somewhat decorated and I have bought about ......3 gifts so far..yikes!  I hope all of you have a very Merry Christmas and a Blessed New Year!!

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!!!!   

End Of The Year Update

Hello and Merry Christmas everyone! 

I have never looked so forward to a New Year as I am to this one.  I usually don't like to roll one year up into one bad one but seriously...if you know our family you would agree.  Just as a recap here are some things we had to face this year.... shoulder surgery, torn Achilles tendon, two bouts of oral surgery (me and Alex), roughly 9 cases of strep throat between all of us, Alex having tonsils removed, Alex being diagnosed with arthritis, my dad falling down the stairs and having surgery to repair his quad muscle, various car issues and on and on it goes. As of January 1st I will be looking at a clean slate and look forward to a much more fun and stress free year!

Since this is a blog about Alex and her arthritis I will update you on her.   She has such a great attitude about her illness.  She has been doing great remembering (better than me) to take her meds everyday!  After missing so much school for having her tonsils out and going to so many doctor appointments (12 days so far this year) her grades slipped quite a bit.  But I am happy to report that as of today she has mostly A's and B's again...one C in Spanish. She has worked so hard and has stayed after school for tutoring two days every week.  She pointed out to me yesterday that her fingers have seemed to swell up considerably again which is a big disappointment!  She has her next check up on Jan. 3rd so we will be discussing this with the doctor.  It did seem to be working there for a while so not sure if this is normal.  We are just hoping they don't move us up to the next med which will be an injection....given by me...yikes!

Other than that we are anxiously awaiting Christmas!  The kids are so excited and loving everything this season brings.  As for Ben and I we are trying to remain stress free and are so thankful for all that we have.  We have a roof over our head, food on our table and for the most part good health.  That is a lot more than some people have and we have to remind ourselves of that!

We wish all of you a very Merry Christmas and a Happy and Prosperous New Year!!   Thank you to all of our family and friends who have prayed for and supported us this year.  We love you all for it and it has not gone unnoticed!

Love,

Pattie

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!!

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!