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!!

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!!!!   

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!!!

Loving 2011 Already!

So far I would have to say the year is off to a good start!  Everyone is happy and healthy and I have been enjoying spending time with Alex since she has an extra week of Christmas break. 

Her doctor appointment went fine and pretty uneventful.  The great news was that her lab results all came back fine. The doctor was looking for any signs that the medicine (methotrexate) was causing damage to her organs and so far it is not.  On visual inspection though she felt that Alex was still showing a significant amount of swelling and is just stunned that she has no pain or stiffness.   She said that Alex must be blocking the pain because it would be impossible to have that much swelling and no discomfort.  I believe she must have inherited a high pain tolerance from my mom whom after open heart surgery did not complain once of being in any pain!   

She will be having another MRI in February or March to compare to the original one to see if there is any reduction in inflammation.  They will also scan her left hand and feet to get a base reading on those areas.  

Other than that life around here is getting back to normal.  The Christmas tree is still up and frankly I don't want to take it down!  I love the holidays and don't want them to end.  Maybe this weekend...sigh.....

Happy New Year once again! 

Pills, Pills, Pills!!

Today was Alex's appointment with her rheumatologist.  Now that her tonisls are out we can start treating her for her arthritis.  This makes it all so real now. 

Those of you who are familiar with arthritis are quite aware of the number one medication prescribed....methotrexate. Here is a short definition of the medication.

 MTX was used initially to treat cancer. By chance, it was discovered to be effective in clearing psoriasis.
In psoriatic arthritis patients, it may take up to six months for the drug to have maximum effect. Effects can include decreased inflammation and pain reduction. Methotrexate can cause serious or life-threatening side effects on your liver, lungs, kidneys, and bone marrow (immune system).

I have not picked up her rx yet but the doctor said she will be taking 6 (small) pills every friday night.  This is because MTX often causes nausea so she wants to have her start it over the weekend so she wont miss any more school.   She also has to take a prescribed dose of folic acid everyday.  This is to help with any side effects she may have. 

Now that she will be starting her meds she has to have blood work taken every 4 weeks.  If you have been reading this blog you know that Alex and taking blood don't mix. She has never actually fainted but has come pretty darn close.  Unfortunately she will have to get used to it.  It is very important to watch her liver while on this medication.

We will wait about 6 months to see if there are any results. This would mean visible results of her joints swelling to go down.  If yes then great!!  If not we will have to also add an enbrel shot to our routine......yes.....me giving her a shot!  Yikes. 

She also got her flu shot today.  This medication will mess with her immune system so we have to try to prevent her from getting sick!  Now I just need to get one for everyone else! 

Thanks for reading!  I will let you know how she does with her new meds.

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!