Alex's Journey

2012-03-05T12:55:00.000-08:00

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

Questions For Muah

2012-02-08T13:07:00.000-08:00

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.....

2012-02-06T18:49:00.000-08:00

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?

2012-02-03T08:09:00.000-08:00

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

2011-12-04T12:47:00.000-08:00

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!

2011-10-05T18:01:00.000-07:00

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. 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. Why the doctor never saw the MRI report before today....6 months later....is beyond me and not acceptable. I will have to be much more vigilant from now on. What if we had been dealing with something more serious!

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!!

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!!!!!

2011-05-03T18:32:00.000-07:00

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 topic 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. I LOVE music. I have gone to soooo many concerts growing up and love sharing this love with my family. 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!

2011-02-16T12:30:00.000-08:00

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.

Loving 2011 Already!

2011-01-06T19:54:00.000-08:00

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!

Goodbye 2010 Hello To New Beginnings!!

2010-12-31T09:05:00.000-08:00

Happy New Year! I know my last post was about how crummy last year was so I wanted to write about what I am most looking forward to in 2011. I am not one to make New Years Resolutions because honestly I am afraid of failure. So this year I have come up with intentions. I feel with a little faith and determination I will succeed.

1. Be Thankful! We truly have so much to be thankful for. We live in a beautiful city and state. We both have great jobs that we love! We are still happily married. We love our kids! We are blessed by a wonderful church that continues to strengthen our faith and teach our kids what it's all about! My parents live close by and love us so much...and we love them too!! Our kids go to great schools and have wonderful friends. I have this blog to connect with other families out there! I could go on forever!

2. Save Money! A few of our struggles this year were due to finances. I vow to spend less this year than last. To always use coupons! To think twice about mindless purchases. To work more and learn new things. To sell what we no longer use or donate to those who really need it. To make more meals at home. And most importantly set a monthly budget and save save save!

3. Play More! This kinda goes along with #2. Playing is free, its fun, its exercise, its relationship building, its skill learning and oh yeah fun!!! One of my fondest memories growing up was sitting around my Aunt Anne's dining room table playing games. We would stay up so late, just laughing, talking, bonding all while playing! I hope to do more of that with my kids and friends and family.

4. Strengthen My Faith I would love to join our small group bible study program at our church. I also want to implement a family bible study. We have done it here and there but when things get busy we let it slide. If anyone has a program they follow I would love to know.

Well, I think that will do it. What are your resolutions this year? Try setting intentions instead. That way it is something you can truly work on all year! If you have any good ones leave them in the comment section!

Happy New Year!!! 2011!!!

End Of The Year Update

2010-12-22T09:54:00.000-08:00

Hello and Merry Christmas everyone! I sure have been busy this holiday season and have not updated this blog as much as I was planning on!
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

Pills, Pills, Pills!!

2010-11-03T20:47:00.000-07:00

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.

Super Quick Update

2010-10-20T11:49:00.000-07:00

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.

Recovery Going Well...day 4!!

2010-10-16T20:51:00.000-07:00

Alex had her tonsils out on Wednesday (today is Sat) and is doing quite well. I think I had freaked myself out by reading all these horror stories online about recovery being horrible. Now, it did say that days 5-7 can be bad again which will start tomorrow so we shall see.

Overall she is doing great. She has been in bed for the most part and been watching tv non-stop! She has been eating soft foods since day one. Mac and cheese is her favorite, mashed taters, chrushed ice (from Sonic...they sell it there by the bag) and soup. She is also drinking tons of water, apple juice and Gatorade. Oh and lets not forget Popsicles. She has probably had about 15 since Wednesday!!

Today she is mostly complaining about her ears hurting her which is a normal but weird side effect. I guess because the tonsils are so close to her nerves for her ears. She has also complained that it hurts when she talks so she is mostly whispering.

She is still needing Tylenol with codeine at night and for some breakthrough pain. It is almost gone so I will probably call the doctor for more just to be safe. Especially since the doctor said that the pain will get bad again when the scabs start to come off.

Enough of that lovely talk. Thanks everyone for all of your prayers through this. I am just so glad to have it behind us so that we can start to focus on her arthritis.

Tomorrow is the BIG day!!

2010-10-12T11:56:00.000-07:00

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

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

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

Some Things Dont Go As Planned....

2010-09-29T10:13:00.000-07:00

Well, just 48 hours before Alex's scheduled tonsillectomy she came down with a high fever and swollen tonsils....strep throat again! The surgery was off! It is so frustrating. Having a surgery of any kind is such a mental thing. Preparing myself and Alex for what was to come. We will be rescheduling it soon...maybe even on Monday. The crazy thing is that this is probably the worst case of strep she has ever had. Her throat was so swollen that she couldn't even eat or drink. After a day on antibiotics she is feeling much better and will be back at school tomorrow.

To add to all the craziness I had to have a tooth pulled yesterday under conscious sedation. The tooth had had a root canal and crown about a year ago but somehow it had cracked and an infection got in there. So, they had to pull it in pieces and get some of the roots out of my jaw. I am a bit swollen and sore today but it will be fine in a couple days.

Ben (my husband) left this morning at 4 am for a 5 day business trip to Washington D.C. He works for a dermatologist who does liposuction so he is going to an International Plastic Surgeon Convention. He is one of the exhibitors. He has been working super hard to get it all ready! I am sure he will do great!

That's all for now.....enjoy the rest of your week.

Taking Care Of Me!

2010-09-24T10:07:00.000-07:00

Life has been crazy lately! It's always busy with three kids but I have reached my limit and my body is mad at me! A couple years back I had a root canal on a tooth that the doctor wasn't too sure about. I guess the cavity was pretty bad and most of the tooth had to be sanded away. About a month ago I started to notice a yucky taste near the tooth, and upon closely checking it out I noticed that the tooth was unstable...even a bit loose. The past few days the taste has been worse and it has started hurting. I was under the impression that a tooth with a root canal wouldn't hurt but if there is an infection it will eventually make the gums, jaw, face and neck hurt.

So, with everything else going on right now I get to go to the oral surgeon today to get the tooth pulled. Today is my initial visit so not sure if they will give me antibiotics and have me come back next week or if they will just do it today. I am hoping for today! I have had teeth and wisdom teeth pulled before and know that the pain of recovery is actually better than what I am feeling right now.

Alex's surgery is just 4 days away now and I want to be at my best to take care of her. I was really hoping to take care of this after her surgery but I am afraid of making the infection worse. I know that is not too safe to do.

Oh the joy....

One Week Until Surgery!

2010-09-21T09:37:00.000-07:00

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

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

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

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

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

2010-09-14T09:57:00.000-07:00

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

2010-09-06T14:18:00.000-07:00

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!

Arthritis or Normal Aches and Pains?

2010-09-03T10:05:00.000-07:00

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

2010-09-02T11:01:00.000-07:00

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 in 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

2010-09-01T16:37:00.000-07:00

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 very 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 do usually 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!