Friday, June 26, 2009

Poly-Articular Juvenile Idiopathic Arthritis, RF Negative.

I found a really good website that basically explains everything. So if you have time to read it, I would recommend it.

-Bonnie


What is it?
Juvenile idiopathic arthritis (JIA) is a chronic disease characterized by persistent joint inflammation; the typical signs of joint inflammation are pain, swelling and limitation of movement. “Idiopathic” means that we don’t know the cause of the disease and “juvenile”, in this case, means that symptoms appear before 16 years of age.

What does chronic disease mean?
A disease is said to be chronic when the appropriate treatment does not lead to an immediate recovery, but only to an improvement of symptoms and laboratory test results. This also means that when the diagnosis is made, it is impossible to say for how long the child is going to be sick.

How frequent is it?
JIA is a rare disease that affects about 80-90 per 100,000 children.

What are the causes of the disease?
Our immune system protects us from infections (virus and bacteria). In doing so, it is able to distinguish what is harmless and part of our body and what is foreign and potentially dangerous, which it destroys.
It is believed that chronic arthritis is a consequence of an abnormal response of our immune system, which, due to unknown causes, loses part of its capacity to distinguish between dangerous and normal cells and attacks its own joint components.
For this reason, diseases such as JIA are called autoimmune, meaning that the immune system reacts against the organs of its own body.
However, the precise mechanisms that cause JIA, as with as most human chronic inflammatory diseases, are unknown.

Is it a hereditary disease?
JIA is not a hereditary disease, since it cannot be transmitted directly from parents to their children. Nevertheless, there are some genetic factors, largely still to be discovered, that increase the chance of developing the disease. The agreement in the scientific community is that this disease is multifactorial, which means it is the result of a combination of genetic factors and exposure to environmental factors (probably infections). Even when there may be a genetic predisposition, it is very rare to have two children affected in the same family.

How is it diagnosed?
Doctors diagnose someone as having JIA when the onset of the disease is before the age of 16, arthritis lasts for more than six weeks and the causes are unknown (which means that all other diseases responsible for arthritis have been ruled out). The arthritis must be present for more than six weeks in order to exclude forms of temporary arthritis that may follow viral infections.
The diagnosis of JIA is, therefore, based on the presence and persistence of arthritis and the careful exclusion of any other disease by medical history, physical examination and laboratory tests.

What happens to the joints?
The synovial membrane is the cellular lining surrounding the joint and is usually very thin. In JIA it becomes much thicker and filled with inflammatory cells, while the amount of the synovial fluid inside it increases. This causes swelling, pain and limitation of movement. A characteristic feature of joint inflammation is joint stiffness, which occurs after prolonged rest. It is, therefore, particularly pronounced in the morning (and referred to as morning stiffness).
Often the child attempts to reduce pain by keeping the joint in a position half-way between flexion (fully bent) and extension (straight), this position is called antalgic indicating the fact that it is maintained to reduce pain.
If not properly treated, joint inflammation may produce damage by two main mechanisms:
a) The synovial membrane may get very thick and form what is called the synovial pannus, which, through the release of various substances, provokes the erosion of articular cartilage and bone.
b) Keeping the joint in the antalgic position for a long time causes muscle atrophy, which is the wasting away of muscles and soft tissues, leading to flexion deformity.

Are there different types of the disease?
There are several different forms of JIA. They are mainly distinguished on the presence or absence of systemic symptoms. Systemic symptoms are symptoms that affect many organs, such as fever or rash and on the number of joints involved. By convention, the different forms of JIA are defined according to the symptoms presented during the first six months of the disease. For this reason, they are often referred as onset forms.

Systemic JIA. This form is diagnosed because of the presence of systemic features, besides arthritis. The main systemic symptom is represented by high spiking fever, often accompanied by a salmon coloured rash that appears during fever spikes. Other symptoms may include muscle pain, enlargement of the liver, spleen or lymph nodes (groups of cells that filter out bacteria etc., as a critical part of the immune system), and inflammation of membranes around the heart (pericarditis) and lungs (pleuritis). Arthritis may be present at disease onset, or appear later on. The disease may affect children at any age.
About half of all patients are diagnosed with systemic features. These patients tend to have the best long-term prognosis (predicted outcome). In the other half of patients, systemic symptoms often tend to subside with time and joint involvement becomes more important. In a minority of these patients, systemic symptoms persist together with joint involvement.
Systemic JIA accounts for less then 10% of all JIA cases, but is seldom observed in adults.

Polyarticular JIA. This is diagnosed because of the involvement of five or more joints during the first six months of disease and in the absence of the above mentioned systemic symptoms. The presence or absence of an autoantibody in the blood called rheumatoid factor (RF) allows for polyarticular JIA to be distinguished into two subforms: RF negative and RF positive.
1) RF positive polyarticular JIA. This is rare in children (<5% of all JIA patients). It is considered the equivalent of adult RF positive rheumatoid arthritis (the major type of chronic arthritis in adults). It often causes symmetric arthritis affecting mainly the small joints of hands and feet, initially, extending to the other joints as disease progresses. It is much more common in females than in males and usually has its onset after 10 years of age. It is often a severe form of arthritis.
2) RF negative polyarticular JIA. This accounts for 15-20% of all JIA cases and can occur at any age. It is a complex form, which probably includes different diseases. The variable course and eventual outcome of the disease in different patients reflect this complexity.


website: http://www.printo.it/pediatric-rheumatology/information/UK/1.htm

Thursday, June 25, 2009

To Ashurity...

Okay, so Ashurity, I looked up the scientific facts about how Methotrexate works... And this is what I came up with....

This medicine acts by altering the body's use of folic acid (a vitamin), which is needed for cell growth. Scientists suspect that this interference with folic acid is an important reason for methotrexate's benefit in rheumatoid arthritis. Methotrexate belongs to a group of medicines that are called "second-line therapies" or "disease-modifying anti rheumatic drugs." These drugs may affect the activity of RA to a greater extent than commonly prescribed drugs, such as aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs). Methotrexate is usually taken along with NSAIDs. It may begin to work as early as three to six weeks after beginning treatment.

so while she is taking this it is important for her to also be taking a multi-vitamin because this drug uses her Folic acid intake to the max to help with the growing back of her good cells.

Lucy has an Auto-immune deficiency which as causing her immune system to overcompensate and is attacking her joints.

I hope that helps?


Another Lucy update.

What a Day! I mean this was a pretty bad day all around for Lucy and I.
We woke up early, 5am, to head for Salt Lake. I figured it would be less hassle than trying to stay the night somewhere, and getting up early anyway. So We got to the University Hospital around 730, which mean we had a half hour to spare, which was good because neither of us had eaten anything. Don't think I'm a horrible parent because I didn't feed my child... I tried. She just wont eat that early in the morning. I don't blame her, because I get sick if I do too. So anyway. So we sat in the can and ate some grapes, and crackers.
When 8 finally came we went inside. when we got into the Doctor's office, Bernadette, who is Dr. Bonsack's assistant, she is the one who examines the patients and diagnoses them. As she was feeling around her joints and checking her breathing, Lucy was not too sure. She cries when any Dr. or strange person enters the room at an office. She knows what is coming. Then she diagnosed Lucy, and then talked to me about the possible treatments and such, and what the side effects of the medicines would be, and all the different kinds of Arthritis and what Lucy has. Then Dr. Bonsack came in and he just sat on the floor with Lucy, got down on her level. And would you know it, Lucy LOVED him!! He was even touching her knees, and toes, and feeling her neck... Lucy just thought it was hilarious! She thought he was the funniest thing! So that was a huge comfort to me. So here is the diagnosis:

She has Poly-Articular Juvenile Idiopathic Arthritis. What a name huh? Poly, meaning she has Arthritis in more than 5 joints. As far as they could see, she had it in pretty much all of her body. It spread to her whole body in a matter of 6 months! From her ankles to her knees, to her elbows to her wrists all the way through her fingers, and even in her neck. This was pretty shocking for me as her mother. So since it is so severe they are gonna go in strong with Medication. She will be taking two different medications.
The first one is Naproxin. This acts just like Motrin or Advil. it's just stronger and lasts longer so I will only have to give it to her twice a day. (3ml twice a day) This will essentially calm down the inflammation, and help with the pain. (She has only had one dose so far, and I can already see an improvement!)
The other one is called Methotrexate. They compares this one to chemotherapy. Are you freaking out yet? I was! Well it acts like chemo but it is not going to be as strong because she doesn't have Cancer, and she is getting a TINY dose only once a week (.2ml) But here is the bad part, I have to inject it into her with a needle once a week. :-( Yes, I am very nervous about it. There could be some side effects with this one. Hair loss, mouth soars, nausia, loss of appetite, but they told me that only 1 in 10 children experience them, so Lucy could be in the lucky 9. Only time will tell. We haven't done the injection yet, I am going to do it tomorrow with my cousin, Christine, since she knows how to do it.
SO this is a lot to take in, I know. But I am so grateful to finally have a solution, so that my baby can get better and walking!
That's pretty much all I can think of right now. If you have any questions, please comment, and I will try and answer them. Thanks for all of the prayers and support. We sure love all of you!
PS, we ran out of gas, and had no money, and we were saved by Mr. John Hoyt Jr. and then Lucy got sick with something last night and threw up about 5 times. But she is better now. WE are all just glad that yesterday is over! (she is fine now)

Sunday, June 21, 2009

Sat June 20th

We started our day out spending Tyler's gift card from his Mom, And he got three new shirts for work! The first one is a black short sleeve polo, the other two are long sleeved button ups. Thanks Carolyn/Mom!!


and then we stopped at Coldstone for Tyler's free birthday treat! Told ya his birthday would last all weekend!

Then the fun ended. We came home and did 3 BIG loads of dishes!! This is a result of a Lazy Friday.

Saturdays are Tyler's night to attempt cooking. After locking ourselves out of our Apartment, and getting back in, I helped him through making onion rings. They turned out pretty well!
I tell you, If i never cut another onion in my life it wont be enough. I hate these things! I was crying black tears!
All in all, a pretty good day, minus the being locked out part... not so fun.

Saturday, June 20, 2009

my first video editing experience.

http://www.youtube.com/watch?v=rfVZg6N8dZk

Leave your comments below.. If you liked it! Thanks.

Wednesday, June 17, 2009

Birthday Breakfast

Tyler ordered Swedish Pancakes (aka: crepes) So that's what he got!


Here is all the ingredients for the birthday cake, before the birthday cake.





The Birthday Cake




Here is his cake that Lucy and I made him. I was pretty impressed. I put all of his favorite candies on it, (swedish fish, sour straws, and heath candy bar) and it was very tasty! He even said so which is saying a lot because he doesn't like cake, (we had ice cream cake at our wedding). But when he got home at 9:30 tonight we sang and he blew all 25 candles out!! Happy Birthday Babe!!

video

Tuesday, June 16, 2009

Just...

Messing around with the different settings.





Good day to Color

Outside!!




Monday, June 15, 2009

Friday, June 12, 2009

BORED! Daddy come home!

                                                       This is pretty much a daily thing


                         Thanks Nana and Papa for the crayons, they are her favorite toy! lol!
                                           "Look Mom, I am so good at this coloring thing!"
Mmm.... cookies, better eat them all before Dad gets home tonight!!

NICU Cousins!




Hard to believe they were both born with the same problems, in the same Hospital. Look at them now!!

Visiting in Utah

Liz, Scott and Brooklin came to Utah for a Family Reunion, so Lucy and I drove down for a day visit. It was so much fun! These pictures are from Dinner with Aunt Lawayne and Cousin Randi.


                                   Hmmm.... Scott looks real tired... Ready to go home yet??
Sorry Randi... I thought I got you in one of them. But We all know you were there! It was so good to see you guys!

Saturday, June 6, 2009

Broken? Probably not.

So Tyler and I went to play Vollyball tonight with My cousin Christine and some other people from her ward, and Lucy ended up with the jammed finger. Poor girl got her finger stepped on by one of the other kids. It swelled up so much... It is pretty rock hard. 

since she is a baby and we figured they wouldn't do much at the Dr.s if we took her, I played Doctor. I just got a popsickle stick cut it in half, and taped her up. hopefully the swelling will go down tomorrow, so she doesn't have to have it on for too long. She doesn't like it too much.
 
                                                   Not a happy camper. Sorry Lucy!

Pre-Birthday

       Lucy with stuffed cheeks, full of pulled pork. Mmmmm..... so good!
My dinner, Pulled BBQ Pork and Loaded Mashed potatoes, but half of it went in Lucy's tummy:)
Tyler had Ribs and rolls... lots of rolls... yummy!
This is Lucy's chocolate Milk... can you guess where we went?
We celebrated Tyler's birthday early because he starts work on Monday, and he wont have much time for anything for the next 7 weeks while he is training, so we celebrated his birthday tonight. He also got a new pair of shoes, and a new BillaBong T-shirt, and of course this nice Skagen Watch that he has been begging me for! I love making him happy!! Happy Pre- Birthday baby!! I love you!

Friday, June 5, 2009

My Birthday Present.

Okay, so i have recently gotten into recording short videos of Lucy and things, and taking lots of pictures. But lets face it, my camera is not the best. It was super cheap, and its not up to date really. The batteries die within like an hour of using them. Gets really annoying. So Tyler and I made a deal that we both get $100 to spend on each other for our birthdays. His is on the 17th of June, and mine is on the 2nd of July. We have just barely started talking about what we both wanted. i was gonna get him a new wedding ring... but he doesn't want to lose another one. So now I have to come up with another idea. So if you have any suggestions email them to me... blhaas22@hotmail.com. But he knows exactly what he is getting me, it's a little more than $100, but I am soooooo excited. And he said that he wants to get me a new camera!! But because he knows it will be more than $100 he said that I have to spend less on him. :-( What a great man I have. But we'll see. So here is the type of Camera I want. This wont be the exact one, but it is small and perfect!


I don't want one of those big really nice ones, I would be too scared that I would break it....

Tuesday, June 2, 2009

Dear Elder Cameron Haas

Elder Haas! Sorry we have taken so long to write you. BUt we have been reading the letters you send to your Mom. She is ALWAYS thinking about you and talking about you! "Wonder what Cam is doing right now?" haha. It's pretty funny. So what is going on here? Well i dont know if you heard that Lucy tested positive for Rheumatoid Arthritis. We haven't gotten her on Medication yet, we are waiting to see a Rheumatologist on the 24th of June. She is doing pretty well all things considered. She got ear infections in both ears last week, so she was on antibiotics for that, I think they have cleared up now though. She is getting big.. We are having a hard time weaning her off the bottle. She does this thing where if she doesn't want to do something... and we try to make her, she cries so hard that she makes herself throw up. Pretty gross huh? Yeah, what a Drama Queen. Well, Tyler finally got a job. Starts on Monday at Telaperformance. It's a company for Sprint wireless. He will basically be helping people with their issues. haha. Anyway, it pays pretty good. And he will have pretty good benefits. He will be a very busy man though. School all day and then work all night. 40 hours. Sheesh. I don't know what I am going to do with my time. Maybe I need a hobby, any suggestions? I hear Bellingham has been having gorgeous weather, and we have been hit pretty hard with storms. I love Idaho storms though. Way better than Washington. Oh, wanted you to know that we started reading scriptures and family prayer every night before we put Lucy to bed. It seems to be going very well. Maybe it helps know that you are out there doing good. Tyler and I got called as Nursery helpers. Last Sunday was our first Sunday and we had 19 kids!! holy smokes huh? We really like it though. Lucy is finally in Nursery too! Hallelua! Well Cam, we are so proud of you and pray for you every night! Love you buddy! -Bonnie, Tyler and Lucy