Christmas tree

The "other shoe"

Some of the other moms on my online support group were taking about "waiting for the other shoe to drop". Why do all of us mom's (or Dad's) who have kids with arthritis feel that way? We are afraid to let our guard down. Back in 2004 when Jacob started with arthritis I didn't know much about it. I didn't have the Internet to go crazy looking up everything. Was that a good thing? Possibly. Because if the unknown back then I eventually did let my guard down and let this disease leave my head. When his joints went into remission, the only time I gave it a thought was at the 6 month doctor appointments. At the opthamologist and the rheumatolgist we always got things look great. Then we were on an 18mo follow-up with the Rheumatologist I believed it was over! I NEVER gave it any thought during that follow-up period.

The "other shoe dropping" in January of 2008 changed my way of thinking. The shoe fell and fell hard! I feel like I am on my guard again and watch for every little ache, skip, stiffness, and just plain old crankiness with him. I worry more when he is sick that things will flare. I just got the rest of his blood work from the rheumatologist on Wednesday and she assured me it is fine. The C-reactive protein which is an indicator of inflammation came back different this time than the last few months. He had been reading <.1 and now it is 1.2. This can simply be from him being sick and it is still reading very low. But it is change. Getting bloodwork every four weeks we are able to follow his progress thoroughly. We do the blood work on a monthly basis to monitor the side effects of the Methotrexate. This medication is a Godsend, but the side effects can be extremely dangerous if not monitored properly.

So for now, I am trying not to wait for the "other shoe" to drop but I am being on the cautious side. Which I think is reasonable. We have Jacob's appointment with Dr. Foster on Wednesday. When he looks at us and says "all clear" and usually follows it with "congratulations", I will let the shoe rest until January when we see the Rheumatologist, I promise!

Arthritis Bill update

This was just posted on the www.arthritis.org website:

We can't give up hope that this bill will eventually pass!

What happened during the lame duck session?
As the 110th Congress winds down, we wanted to provide an update on the status of the Arthritis Prevention, Control and Cure Act (H.R. 1283). There was no Senate consideration of the bill during the November “lame duck” session. It is possible that Congress will meet again in December given the current economic conditions, so we will continue working to find any opportunity to make headway. At the same time, we are beginning to look ahead to the New Year with a new Congress and a new Administration. Your past efforts at reaching out to your Members of Congress have not gone unnoticed as evidenced by the unanimous House passage of the Arthritis Act in late September. The Arthritis Foundation will be calling upon all its advocates again to continue the momentum and push the Act through both the House and Senate next year.

I just wanted to share this Thanksgiving poem:

Thanksgiving Delights

On Thanksgiving Day we’re thankful for
Our blessings all year through,
For family we dearly love,
For good friends, old and new.

For sun to light and warm our days,
For stars that glow at night,
For trees of green and skies of blue,
And puffy clouds of white.

We’re grateful for our eyes that see
The beauty all around,
For arms to hug, and legs to walk,
And ears to hear each sound.

The list of all we’re grateful for
Would fill a great big book;
Our thankful hearts find new delights
Everywhere we look!
-author unknown

I read this poem and thought it was so fitting to my life right now. This has been a difficult year for us. With all of the stresses of Jacob's illness, and the stress of my marriage seperation I don't want to lose sight of what matters most in life right now. I am so very thankful for many things in my life. I am thankful for my children, my family and my friends. I am so very thankful for Jacob's health right now. His joints are quiet as well as his eyes presently. I am very thankful for the friends on my support group these moms have been such a tremendous help in understanding this disease.
I know a lot of you following my son's story are going through a lot with your own children fighting this awful disease. You have to find faith that the doctor's working with your child will find the right medications and your child will be on the way to recovery too. There are so many ups and downs and uncertainty with this disease. You need to take it a day at a time. Be thankful for the small steps of progress.
Happy Thanksgiving to you all.

Ahh a quiet Saturday..

well besides the boys fighting. Jacob woke up today feeling a little better. We had an early start to the day at the movies. We met with the girls I work with, at 8:30 AM to see the movie Bolt. A local dental office that my dental office refers patients too rented out the movie theatre and we all got to go for free! We had free donuts, bagels, juice and coffee too. The movie was terrific! We had a great time.

After the movie Jacob had his basketball try-outs. Last year during the beginning of basketball is when his arthritis flare began. He attempted the first game of the season and was limping so badly he had to be pulled out. We tried to give him rests frequently, and even had a chair on the side of the court to have him sit on when he was off the court instead of sitting on the floor. He was so embarrassed to be sitting there. He didn't want to attempt anymore games because of the fear of his knee hurting. I didn't want to push him either. I have always let him decide what he can and cannot do. He knows his own limits. So he is back at basketball again this year. He is looking forward to the season starting. I am looking forward to seeing my son run up and down the court like every other parent watching their child.

Doctors, doctors and more doctor appointments!

Seriously, I have had it with the running to doctors this week!

Today I picked Jacob up at school at 3:00 sure enough the fever was back! I was going to take him for his monthly blood work but with the fever I figured it was better to get him checked out too because tonight is his Methotrexate dosing. We ended up at the office for about an hour and a half. The doctor checked him first he has a lot of upper respiratory issues. She sent him up for his labs. Jacob surprisingly did well with tonight. Then we had to wait to make sure his counts were all okay. Everything came back within normal range but his sed rate was elevated. This can mean he is flaring with the arthritis. It wasn't too high so I am not going to hit the floor or anything. But this may explain the wrist soreness he was complaining about. The doctor said that we should maybe hold off on the Methotrexate tonight and let his body fight the virus.

I had to page the rheumatologist once again today. The third time in a week. EEKS she knows my voice now. Last night after Jacob's shot he was in the tub and a rash was all over his thigh, on the injection leg. Looking back, a few weeks ago he had a rash on his thigh that he was complaining of. The rheumatologist said it may be from the Humira. It is a side effect but not to be too concerned as long as it disappears!

These kids are a full time job. I somehow manage to work 3 days outside the house too!

The weekend is here! I am praying for quiet and no doctor appointments!

I think the kids are all on the mend tonight! Jacob is doing much better. The fever only lasted 24hrs. I repaged the rheumatologist and she said it was fine to give the Humira tonight. She said it would of been okay last night but with him so feverish it was best not to put him through it. I just did the shot a little while ago. Jacob was happy because his Memere was here to hold his hand for it. He is getting so good at doing the injections. No tears at all tonight. He doesn't even flinch for the needle. The after effects of the med thougyh happen within seconds. He says it burns terrible. He is a brave kid though!

Daniel is continuing to do okay. He is still saying his hip hurts when it goes out to the side. He isn't limping though. I am hoping another couple of days he will be completely better.

There is more sickness in the house tonight though!! I have a feeling this is going to be a VERY long winter. Jacob came home from school running a fever. His temp is almost 101. Tonight was supposed to be his Humira shot. He is just feeling awful. Stuffy nose and a headache. I wasn't sure what to do with the shot so I paged the rheumatologist. She said to hold off on it tonight. If he is better tomorrow give it to him. If he is still running a fever she wants me to call them. It seems like a balancing act between giving immune suppressants and keeping the jra at bay, and giving them and hoping it doesn't make him sicker during an illness. Viscious circle! With JRA, illness can sometimes cause a flare of the arthritis or uveitis. So withholding meds is not a good idea! I hope I will be able to give him the injection tomorrow. This Monday, in the morning while Jacob was finishing homework, he complained of his wrist hurting. He was having trouble writing. He had just started with the cold. I wonder if it was because of the illness.

Daniel update

Daniel seems to be a little better today. His ANA bloodtest came back and it is slightly elevated. It is speckled at 1:40. His pedi doesn't think it is anything. He wants me to just keep an eye on him. I just get so nervous becasue the bloodtests can vary so much with jra. Jacob's ANA is currently negative and he had the flare of his life. Jacob's sed rate is generally pretty low too. Daniel's was 10. So I am going to wait it out! I just worry because he has complained a few times this past month in the morning that his leg hurts.

Daniel

This morning Daniel, my 4 year old, woke up in tears saying his leg hurt and he couldn't walk. Maybe three times in the last month or so he has woken up saying his leg hurt. I had been just trying to make nothing out of it and ignoring the symptom. Because it can't be you know what. Today was different, he was in so much pain. I couldn't ignore it any longer. Jacob's arthritis started at the same exact age Danny is now. So today I started to worry that it may be that. I brought Daniel into the pedi this morning. He had bloodwork and the doctor checked his hip. When she bent his leg up Daniel started to cry. She watched him try to walk. He wouldn't. She called the orthopedic oncall at the hospital. He wanted us to meet him at the hospital. The bloodwork came back with his sed rate at 10. His ANA is yet to come back.

The orthopedic took a look at Daniel's hip. They took xrays. Nothing showed on the xrays. The orthopedic said that it may have to do with the virus he had a few weeks ago. It may of settled in Dan's hip. It is called toxic synovitis. But he is not sure. I told him that This isn't the first time he has woke up stiff and in pain. The doctor was saying that children usually have their Rheumatoid Factor positive for the diagnosis ot JRA. I am not sure if they even ran that test. Jacob's RF is negative. As in MOST children with jra. The orthopedic doctor thought otherwise. As of right now we are giong to watch Daniel for the next couple of days. And wait on the ANA test to come back. I know with JAcob his ANA has been negative and his sed rate low, when his knee was the size of a softball! I know bloodwork is only a help in diagnosing. The doctor said by the end of the week if there is no improvement he will order an MRI. Which will have to be under sedation.(FUN)

This afternoon Dan seems to be doing better. The mornings have been when he has had the trouble. Sound familier.. I am praying that this is a fluke and just reminent of the virus. They say it is uncommon for siblings to be affected. I have heard of some family's that have more than one child affected. I may if this continues, make an appointment with the rheumatologist to have him checked. Just to be sure!

At the beach

We decided to hit the beach today! It was a balmy 57 degrees. Aside from the cool wind it was a beautiful day. The boys had a great time. They were completely soaked and very dirty.

The boys at the beach in November!

Uveitis Facts

Uveitis is inflammation inside the eye, specifically affecting one or more of the three parts of the eye that make up the uvea: the iris (the colored part of the eye), the ciliary body (behind the iris, responsible for manufacturing the fluid inside the eye) and the choroid (the vascular lining tissue underneath the retina). The structures of the uvea, marked here in red, are collectively known as the uveal tract. Uveitis is a serious ocular condition. It is the third leading cause of blindness worldwide, accounting in the United States for 10-15% of all blindness. Untreated or under-treated uveitis, or repeated episodes of inflammation within the eye, can lead to scarring and blinding consequences. Uveitis is a treatable condition. Patients are urged to seek consultation with a uveitis specialist, a physician with advanced training in inflammatory eye disease.

Inflammation of the uvea may occur as a consequence of diverse stimuli. These can be broadly classified according to the following mechanisms: traumatic, immunologic, infectious, and so-called masquerade. Uveitis may affect individuals of any age from infancy on. It also affects people from all parts of the world, and it is highly significant cause of blindness, accounting for 10-15% of all blindness in the United States. The average age (mean age) at presentation is approximately 40 years. Uveitis can affect people at virtually any age. Many patients in the pediatric age group, younger than 16 years, suffer devastating complications of uveitis. The peak age at onset of uveitis, in the third and fourth decades, magnifies the socioeconomic impact of uveitis on the individual and on the community.

The incidence of uveitis in the United States is approximately 15 cases per 100,000 population per year, or a total of some 38,000 new cases per year. Anterior uveitis is the most common form of uveitis, followed by posterior or panuveitis, intermediate uveitis is the least common form but still comprises a significant number of cases (4% to 17% of all cases of uveitis).

Facts about Uveitis:

• Chronic uveitis is more common than acute and recurrent uveitis.

• Chronic uveitis is especially common in patients with intermediate uveitis.

• Nongranulomatous uveitis occurs more frequently than does granulomatous uveitis, especially in patients with anterior uveitis.

• Noninfectious uveitis is more common than is infectious uveitis, particularly among patients with panuveitis and anterior uveitis.

• Bilateral uveitis (in both eyes) is more common than unilateral uveitis (one eyes) in patients with panuveitis and intermediate uveitis.

• Anterior and posterior uveitis cases have approximately equal distribution of unilateral and bilateral cases.

• The mean age of onset is clearly younger in patients with intermediate uveitis, 30.7 years (+ 15.1 years).

• Despite the huge advances in diagnostic techniques and the determination of ophthalmologists worldwide to reach and etiologic diagnosis, many cases remain in the idiopathic category (35% to 50%). The term idiopathic uveitis denotes that the intraocular inflammation could not be attributed to a specific ocular cause or to an underlying systemic disease, and it was not characteristic of a recognized uveitis entity.

• The most common causes of anterior uveitis are idiopathic (37.8%); seronegative HLA-B27-associated arthropathies (21.6%), juvenile rheumatoid arthritis (10.8%), herpetic uveitis (9.7%) sarcoidosis (5.85%), Fuchs' heterochromic iridocyclitis (5.0%), systemic lupus erythematosus (3.3%), intraocular lens-induced persistent uvietis (1.2%), Posner-Schlossman syndrome (0.9%), rheumatoid arthritis (0.9%). Syphilis, tuberculosis, phacogenic uveitis, Lyme disease, and collagen vascular disease (Wegener's granulomatosis, polyarteritis nodosa, and relapsing polychondritis) caused some cases of anterior uveitis.

• The most common causes of intermediate uveitis are idiopathic (69.1%), sarcoidosis (22.2%), multiple sclerosis (8.0%), and Lyme disease (0.6%).

• The most common causes of posterior uveitis are toxoplasmosis (24.6%), idiopathic (12.3%), cytomegalovirus retinitis (11.6%), systemic lupus erythematosus (7.9%), birdshot retinochoroidopathy (7.9%), sarcoidosis (7.5%), acute retinal necrosis syndrome (5.5%), Epstein-Barr virus retinochoroiditis (2.9%), toxocariasis (2.5%), Adamantiades-Bechet's disease (2.0%), syphilis (2.0%), acute posterior multifocal placoid pigment epitheliopathy (2.0%), and serpiginous choroidopathy (1.65%). Other causes of posterior uveitis include punctate inner choroidopathy, multiple evanescent white-dot syndrome, multiple sclerosis, temporal arteritis, presumed ocular histoplasmosis, fungal retinitis, and leukemia.

• The most common causes of panuveitis are idiopathic (22.2%), sarcoidosis (14.1%), multifocal choroiditis and panuveitis (12.1%), ABD (11.6%), systemic lupus erythematosus (9.1%), syphilis (5.5%), Vogt-Koyanagi-Harada syndrome (5.5%), HLA-B72 associated (4.5%), sympathetic ophthalmia (4.0%), tuberculosis (2.0%), fungal retinitis (2.0%). Other causes of panuveitis include bacterial panophthalmitis, intraocular lymphoma, relapsing polychondritis, polyarteritis nodosa, leprosy, dermatomyositis, and progressive systemic scelerosis.

The above-mentioned percentages and figures were obtained from a study of 1237 uveitis patients referred to the Uveitis and Immunology Service of the MEEI, Harvard Medical School, from 1982 to 1992. These figures were found to be similar to the results of other studies of tertiary referral centers from different parts of the world., especially those of developed countries.

Just a thought!

If anyone would like me to post the link to their child's blog email it to me. Reading up on the different Journey's of children who are fighting JRA/uveitis can help others!

Unorganization...

I was just trying to organize the appointments that are coming up. I can't for the life of me remember the date of Dr. Foster's appointment. I am guessing the first week of December. I have to check!! I had to reschedule the Rheumatology and orthopedic appointments to the first week of January. There is so much to keep track of. Jacob is still having bloodwork every four weeks to monitor the side effects of the Methotrexate. He was due for it this week and we weren't able to get to it! I am hoping for Monday. Which means next week will be Humira and bloodwork. Two needles in a week no fun!

We are basically on two month follow-ups for the eye doctor and the rheumatologist. Not too bad. We have come a long way since the beginning of the year. Then, we were going to the doctor every couple of weeks and squeezing physical therapy into the school week too. Nice to be relatively stable. No change is good! When I figure out the dates of the appointments I should post them here to remind myself!

SHHHHHH I snuck a nap in this afternoon. Just thought I would share that! I am exhausted!

Some facts on JRA

Why is Prompt, Aggressive Treatment of

Juvenile Idiopathic Arthritis Necessary?

In the last decade important changes have

occurred regarding treatment of juvenile arthritis that

can prevent long-term disabilities. Published studies

demonstrate:

•

The majority of children with juvenile idiopathic

arthritis will continue to have active disease as

they enter adulthood. (this is discouraging!!!)

•

Persistent synovitis leads to joint deformity and

destruction and often occurs less than 2 years

following onset of disease.

•

Disruption of proper joint function predisposes

children and young adults to premature

osteoarthritis and a potential of lifetime disability.

•

Chronic disability from juvenile arthritis can stunt

the physical and psychological growth of a child,

and may disrupt family dynamics due to ongoing

psychological and economic stresses

What is Remission?

The first phase of remission is the achievement

of

inactive disease

which is defined as: no joints

with active arthritis; no fever, serositis, splenomegaly,

or generalized lymphadenopathy attributable to JIA; no

active uveitis; normal ESR or CRP; and a physician’s

global assessment of disease activity indicating no

disease activity.

Clinical remission on medication

is

defined as inactive disease on medication for a full six

months, and

clinical remission off medication

is

achieved when there is inactive disease off of medications

for a full 12 months. Although many children can

achieve clinical remission on medications, most will

have a flare of their arthritis within three years of

discontinuing medications. (Jacob was just past the 3 year point off meds!)

Can I just stress EARLY DIAGNOSIS IS THE KEY!!! After Jacob was in clinical remission for a few years I didn't give the arthritis another thought. I thought he had outgrown the disease. When his knee flared up this January it was a complete shock and by the extent of the overgrown synovium it had been coming on for a while. When he was seen by his rheumatologist in January it was on an 18mo. follow-up.

Online friends, and many thanks to ABCnews.com

I just made a comment on the article on ABC news thanking them. These kinds of things can help contribute to raising awareness in our fight against Juvenile arthritis. The Internet has been a blessing to find information and to find friends who are battling this disease also. It always helps to hear what others are going through. Another Mom in Oregon named Erika has a daughter named Charlotte. This is a picture of sweet Charlotte.

Charlotte is an inspiration to all the kids who are fighting Uveitis/JIA. She endures so much in her battle. Friends like these are great support. Even though we only get to talk online it is so helpful! Check out Charlotte's journey on the right side of my blog. Erika and I will continue to blog in the hopes that it helps someone out there find answers in their journey. We along with other parents will continue to raise the awareness in our childrens disease. It may help that parent who is told "it's only growing pains" to seek another opinion. Arthritis is real and can do damage if it is not treated in it's early stage.

ABCNEWS.com Article

Nov. 6, 2008
Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.
Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway."Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.Lying to Keep the SecretAlthough some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated."Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends."Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis."Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."Finding Someone to TellAs debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him."Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."
Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment."Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition."Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her."With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child."In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."Copyright © 2008 ABC News Internet Ventures

Jacob is in a web article

Check out www.abcnews.com and click on health. Jacob is featured in a web article on Juvenile arthritis!