Some Things Dont Go As Planned....

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!

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.   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!

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

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

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

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

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

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

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

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

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

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

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

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

Last Day Of Summer

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

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

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

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

Above is Alex on her first day of school!!

Arthritis or Normal Aches and Pains?

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

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

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

Have a great holiday weekend! 

Reality

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

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

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

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

Diagnosis Day

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

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

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

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

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

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

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

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

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