Jacob is 10!

Happy 10th Birthday to Jacob today!! Jacob was born at 5:22 AM on December 27, 1998! He surprised us by coming almost 3 weeks early. It was a good thing, because he weighed 7pds
10 oz's.

Christmas

Merry Christmas to everyone! I can't believe Christmas has come and just about left already! We had a wonderful day today! The boys are enjoying all of their gifts! The are especially loving the Wii. I am amazed at the workout the kids are getting playing! I would highly recommend it for the kids out there with arthritis. I think Jacob is moving every joint in his body! It is great for keeping the kids mobile!
I hope everyone had a nice Christmas. God Bless!

Fun in the snow!

ABC News: Juvenile Arthritis Teens Less Physically Active

I don't think this will ever affect Jacob, but I thought it was interesting!


ABC News: Juvenile Arthritis Teens Less Physically Active

Posted using ShareThis

Eye update

I am a day late on posting the good news!! Jacob had his appointment with Dr. Foster yesterday. His eyes remain clear! Dr. Foster said that Jacob is a success case. His eyes are free of cataracts and no glaucoma present (he was able to do the pressure test and the numbers were very low). The Humira, along with the methotrexate, are still doing the job! So we remain on the 8 week follow-up.

After the long day going to the appointment yesterday it was also shot day! Jacob was not happy about it last night. He has been doing well with the shots but last night he had other ideas! He fought me to just put the numbing cream on. And it took another hour to get him to sit and let me do the shot. He screamed for a half hour after the shot too. So last night both of us slept very well after the stressful day! I can't believe we still have 2 more years of these battles. Hopefully he can learn to do the shot himself before he turns my hair gray! It is no fun!

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!

the "bug" part 2

Last Friday, Jacob had the stomach bug/fever. Well, last night Daniel had the "fever"! And what a fever it was! I am hoping this was part of the bug that already went through this house and nothing new. Daniel had been fine the entire day yesterday. At about 8:30 last night he spiked a 104 degree fever! He had the chills and was nodding off to sleep. By 9:00 we were in the ER. They checked him for everything from the flu to strep throat, ear infection, RSV and nothing showed. They took bloodwork and the only thing that showed up was his white blood cell count was elevated. He was given two shots of antibiotics and we were finally sent home at 3:00 AM this morning. What a long night. I slept about an hour last night. He did get to sleep some in the ER so he was up at his usual 7:00 time. With trick or treating tonight I am hoping he still feels better. I am keeping up the tylenol and he is fever free at the moment. I think this is the third year in a row that he has been sick on Halloween. Popular week!

Two appointments, one day!

Today we left early this morning in what we thought was going to be just Jacob's orthopedic appointment. When we arrived at Floating Hospital in Boston at 10:30 this morning there was a very Full waiting room. When I was checking in with the receptionist I spoke to the receptionist in Rheumatology who was also checking patients in. I knew that the orthopedic doctor was very backed up so I asked if Dr. Miller, who is the other ped. rheumi could squeeze us in instead of seeing Dr. Lopez on Thursday and she was able to do it!

We saw Dr. Miller first. She is really nice. I really don't mind Jake seeing either doctor they are both very good. She said everything was looking really great. She didn't remember his entire history but when I mentioned the synovectomy she said oh ya it was the case that it was suspected to be PVS syndrome. Jacob's knee was one of those cases that was not in the ordinary description of what JRA looks like. (you may recall the biopsy and uncertainty of the MRI back in March). Anyway, she said he looks great today! The only concern is still the small leg length discrepancy and the crooked back. No obvious swelling anywhere. (thank God) I did ask why he was still limping occasionally after running and sitting for long periods. She said his knee will never be"normal" after all he has gone through. That is kind of discouraging for a nine year old.


We went off the take a scan o gram of his legs.

After the xray and waiting 2 1/2 more hours we saw the surgeon. (very long wait, busy man though!) Dr. Braun reviewed the xray and said it was only maybe a half an inch difference in length. Not much to be concerned about. It is to be watched very closely though. The left knee bone is still overgrown. The width is larger if you look at both knees. Again not much to be concerned with. The back on the other hand, is curving quite a bit. The doctor said this can happen because of the leg growth because of the JRA but the lengths are not that far off to do this. Jake's back could be a entire different issue.

We are scheduled just before Christmas to go back to both doctors. Xrays are going to be taken of his back then to review the scoliosis. The meds are to remain the same. Those are not going to be changed because Jake's eyes are running the show. These meds are still working to retrain his immune system for the complete two years to keep the uveitis at bay.

A little stomach bug

I didn't think I would be posting until after the orthopedic appointment on Monday. I figured I would fill you in on last night's excitement. Yesterday, when I picked Jacob up at school he was complaining of his stomach hurting. I knew the night was going to be fun. At about 6:00 he started vomitting. The stomach bug has hit. From six until about 1 o'clock this morning he laid with me in bed and threw up every half an hour or so. I was getting worried that he would get dehydrated. He didn't thank God! He is doing better today but still quiet and not eating. I held off giving him his methotrexate last night because I was worried that it would make his stomach hurt and feel worse. I was going to give it today but he is still not feeling well so I decided to skip it. I hope it doesn't cause any issues. Hopefully he is on the mend today!

An update and some thoughts

I know I haven't posted too much lately. I guess that is because there isn't as much to say, which is a good thing! Fall has come here along with some very cold weather! The heat has been turned on. I am dreading thinking about paying those heating bills.

Jacob has been relatively stable. Next Monday we have to go into Boston to see the orthopedic surgeon. He is going to do xrays to check the growth of Jacob's leg bones. I am very curious to see what the result is. I still think the leg lengths are off. I can see it in the way his shoulders are when he is standing. I am going to have the doctor look at the scoliosis also. I am also wondering if we should do another MRI of his knee. Jacob is still have pain with it. After soccer last weekend he was limping like crazy. He also has complained that if he sits to long on the floor he is getting stiff and sore.

Next week is also the rheumatologist appointment. It is on Thursday. This will be good timing to review what the orthopedic says. I am also going to have the Rheumatologist see what's up with his fingers. Jacob has been using a pencil with a thick grip on it and he says he is doing much better in school with it. His writing is awful though. He used to write so much neater. I don't know if it is because of the stiff/sore fingers or just laziness.

I just wanted to comment on the map I have on the side of my blog. I think it is so cool that people from all of the world have been following my son's journey. The rarity of the disease makes us all look for any info we can get our hands on. I started this blog because of finding "Anna's journey"when I was desperate to read anything I could to see what we were in for in regards to uveitis.
You can read anything you want in a book but I think reading other people's stories on the real life of fighting these diseases is so much more accurate!

Not only do the blogs help me to understand how our children and their families cope with chronic illness, the support group that I frequent (www.kidsgetarthritistoo.com) have amazing moms who can answer any question imaginable. Out of the group of us we have all had experience in every aspect of Juvenile arthritis. So any question we have there is always an answer. Check out the site if you would like!

P.S. Shot day today! Jacob didn't remember this morning. Whew. He has asked the last few mornings if it was the day. So I will spring it on him when he gets home from school. The quicker it is done when he gets home the happier he will be for the rest of the night!

Fall in New England

These picture's are from my deck. I thought I would share them.
The leaves are already starting to fall off the trees. :(

Humira shots

Can I just say it one more time.. I really hate giving this shot! It is still not getting easier for me or Jacob! Tonight's shot pain seemed to linger a little longer. I can just picture the med creeping into his muscle burning! !Yikes!!

Don't get me wrong I am so very thankful it is available to help Jacob but can't they make it a little less painful? It would make life so much easier!

finger pain

Over the past week or so I had noticed Jacob holding his fingers a lot. While waiting for the bus, I asked him one morning last week if they were hurting him. At first, he said no. I started to bend them to see if I would get a response. As I was doing this he pointed out a few fingers that were very sore. I asked him if they hurt at school he said they did when he used a certain pencil. I let his teacher know that he has complained about his fingers and asked her to keep an eye on him. When I picked Jacob up from school on Friday he said his teacher gave him a pencil grip. He was very happy and said his fingers didn't hurt today!! (thanks Mrs. P-E!!)

It is so funny, well not really funny, that he was in pain and didn't say a word about it until I brought it up. Once again an example of how a child learns to live with chronic pain. :(

Just yesterday, I brought the kids to a park and Jake was running around playing and decided to go across the monkey bars. I could see he was struggling and when he jumped down he immediately grabbed his fingers. He said that they hurt badly.

The rheumatologist appointment is in a few weeks. I am curious to see what he thinks.
It is tough to see this happening because it is going on despite the heavy duty medications he is on. I don't know what the doctor would do about it. I don't know what he could change. So basically a nine year old has to live with chronic pain???

I think the right fingers look a little swollen

What a frustrating disease!

Visit with Dr. Foster

The Humira is doing it's job! Jacob's eyes remain clear today! Jacob did really well at his visit today. They were even able to check his pressure in his eyes. They haven't been able to get the reading for the past few visits, because he couldn't do the test. He is very sensitive to anything touching his eyes. The pressure readings today were 13 in his right eye, 15 in his left eye. Well within normal range. I asked the fellow today why it is so important to check the reading when he is off all steroid drops and his eyes are clear. He said that scarring can occur in the eyes from the damage the uveitis could of done initially. So his eyes will still need to be checked for glaucoma each visit. Return visit in 8 weeks!

September is Declared Ocular Inflammatory Disease Month in Massachusetts

We are very privileged to be treated by Dr. Foster

We will be seeing him tomorrow morning!

News

SEPTEMBER, 2008 PROCLAIMED OCULAR INFLAMMATORY DISEASE AWARENESS MONTH IN THE COMMONWEALTH OF MASSACHUSETTS

Currently there are over 280,000 diagnosed cases of Ocular Inflammatory Disease in the United States. However, many people remain unaware of the serious nature and indications of this complex illness and avoid seeking treatment. It is my hope that by declaring September as Ocular Inflammatory Disease Awareness month the rate of unnecessary blindness will be mitigated and early intervention enhanced. – Jennifer Callahan, State Representative

Boston, MA- Governor Deval Patrick has proclaimed September 2008 as OCULAR INFLAMMATORY DISEASE AWARENESS MONTH in the Commonwealth of Massachusetts. Destructive inflammatory diseases of the eye such as uveitis are the third leading cause of preventable blindness in developed Countries. Untreated or under-treated uveitis, or repeated episodes of inflammation within the eye, can lead to scarring and blinding consequences. Symptoms of uveitis include redness and irritation of the eye, blurred vision, eye pain, light sensitivity and floating spots. State Representative Jennifer Callahan, D-Sutton, will present a Resolution from the Massachusetts House of Representatives in recognition of the awareness month to C. Stephen Foster, MD, Clinical Professor of Ophthalmology at Harvard Medical School, world renowned ocular immunologist and president and founder of the Ocular Immunology and Uveitis Foundation(OIUF) during a ribbon cutting ceremony during the Foundation’s annual “Walk for Vision” on September 27th at noon in front of the Royal Sonesta Hotel. Proceeds from the event will benefit the Ocular Immunology and Uveitis Foundation’s groundbreaking research efforts in ocular inflammatory disease and ocular immunology. The 5K walk along the Charles River in Cambridge will conclude with a lunch at the Royal Sonesta and a meeting of the OIUF support group featuring Dr. Foster as the keynote speaker, who has taken a leadership role in informing the public about ocular inflammatory disease. He states, “Ocular immunology is not a particularly glamorous field, and few ophthalmologists choose to enter it. As a result, few ocular immunologists exist, and so many patients with uveitis and other forms of eye inflammation continue to be treated with 1950’s standard of care while much more effective and safer strategies exist today. The result is that far more people are eventually blinded by eye inflammation than should occur.”
The mission of OIUF is to find cures for ocular inflammatory diseases, to erase the worldwide deficit of properly trained ocular immunologists, and to provide education and emotional support for those patients afflicted with ocular inflammatory disease. Other upcoming events hosted by OIUF include two physician education conferences in October. The “International Symposium on Birdshot Choroidopathy” an autoimmune disorder, will take place on October 4th. The Third Annual Physician Education Conference: “New Paradigms in the Treatment of Anterior Segment Disease” will take place on October 25th. Both conferences have been approved for Continued Medical Education requirements for physicians.

More about C. Stephen Foster, MD and The Ocular Immunolgy and Uveitis Foundation

In 2005 C. Stephen Foster, MD, Clinical Professor of Ophthalmology at Harvard Medical School, founded MERSI (Massachusetts Eye Research and Surgery Institution), a state-of-the-art facility dedicated to research, education, surgery, and treatment of inflammatory diseases of the eye after 30 years at The Massachusetts Eye and Ear Infirmary where he created the Immunology and Uveitis Service and began the Uveitis and Ocular Immunology Fellowship. Dr. Foster continues to be devoted to the care of his patients, teach fellows and direct a research laboratory in his new private institution, where he has formed a research and education Foundation, the Ocular Immunology and Uveitis Foundation.

Foster is a leader in his field and is widely regarded by his colleagues and patients as having revolutionized the care of adults and children with ocular inflammatory disease. Through research studying diseases outside the field of ocular medicine, Foster has developed new treatments that are dramatically more effective than the traditional treatment of steroid drops. Foster estimates the new treatment, a type of chemotherapy, raises the number of patients whose blindness
is reversed or prevented to around 80 percent, compared with the previous rate of almost zero.

Dr. Foster has authored over 600 publications, sees and treats patients from all over the world with cataracts, glaucoma, cornea and external ocular diseases, and uveitis. He teaches cataract, corneal microsurgery and vitreal surgery for inflammatory eye disease. Among the many important awards honoring Dr. Foster for his pioneering work are the following: the American Academy of Ophthalmology Award (1983), the Hippocrates Medal, Swedish Royal Academy of Medicine (1985), the American Academy of Ophthalmology Senior Honor Award (1993), the Research to Prevent Blindness Senior Scientific Investigator Award (1995), the Diaz Caneja Medal (2003), the International Ocular Inflammation Society Award (2003), the Mildred Weisenfeld Award for Excellence in Ophthalmology (2005) and the American Academy of Ophthalmology’s Lifetime Achievement Award (2007).
The Ocular Immunology and Uveitis Foundation’s exclusive education program educates patients, their family members and friends, and the medical community about ocular inflammatory disease through educational conferences, literature and outreach. This support is offered on a worldwide level. OIUF maintains the most complete ocular inflammatory disease web resource which offers all patients and medical personnel a vast amount of information that is easily accessible and available on its website.

For more information about Dr. Foster and the Ocular immunology and Uveitis Foundation please visit www.uveitis.org

Arthritis Bill update

The Arthritis bill has passed through the House of Representatives. It is on to the Senate. If the bill gets passed through the Senate it is on the way to the president to be signed. Keep your fingers crossed. This bill is so very important to everyone with arthritis, especially the children. The shortage of pediatric rheumatologists is increasing. There are under 300 of them in the entire US. The bill will encourage more physicians to move into the specialty. There are currently 5000 or so children in Massachusetts alone, who have arthrititis. There are only a handful of doctors to treat them.

Boston Arthritis Walk pictures

Team pictures

Jacob and Dr. Lopez

Walk is tomorrow!

The walk is tomorrow. I Just finished making the shirts for the walk. I am praying that the paint dries in time! We will be leaving for Boston in the morning!

For all who were waiting I had to reschedule Jacob's eye appointment he had for yesterday. I was not feeling well. Long story.. I am very upset we didn't get to go for the appointment. I had rescheduled it until next week. But just realized I can't make it next wednesday either! So I am going to call tomorrow and make it in two weeks. This will bring us out 10 weeks for the appointment. Not a good thing!

Update on the walk... The walk is this Sunday! We are ready to go. Pray for Sunny weather!!
Anyone still wishing to support Jacob in the walk can donate by a clicking on the link to the right.
All of the money goes to the Arthritis Foundation to help fund a cure for this awful, debilitating disease.


Thank you to all who have supported our efforts!! Stay tuned for pictures from the walk!

Soccer yesterday was much better. Jacob was kept on defense and there wasn't as much intense running. At times, he was still limping a bit or skipping. The skipping he does reminds me of how he handled the pain when he was first diagnosed. If you remember that was the first sign we had when he was 5 and started this disease. This morning he woke up not doing to badly. Last week the day after the game he was extremely stiff and sore in the morning. I think he will be okay playing as long as he isn't pushed too far and is allowed to rest frequently. He had a great time playing yesterday! His team also won the game!

On Wednesday this week, is Jacob's appointment with Dr. Foster. We are about 7 or 8 shots into the Humira. I am worried for some reason about the appointment. I read a lot on the support boards on http://www.uveitis.org/. I read all the posts that other parents write about their child's fight with the disease. It just seems like every child has ups and downs with the disease. You never read much about the child's eyes staying clear once and for all. It seems like such a rollercoaster ride. I keep trying to stay positive but each appointment my fear of Dr. Foster seeing cells in his eyes is very real. Each time we get a clear bill of health, it is peace for another 8 weeks. Then it starts all over again.

Speaking of the Humira, there was just a new FDA release on the side effects of Humira. More to worry about. Anyone who is on any of the TNF blockers should be aware of this new risk. You can read up on it at http://www.fda.gov/bbs/topics/news/2008/new01879.html

Soccer

Soccer started yesterday. That is Jacob in the center of the picture. He was very excited to play again. I was very hesitant to sign him up this season becasue of the uncertainty of his knee issues. I knew this was going to be the test to tell if his knee would be okay. He started out well. Soon after the game began I noticed him limping. He was running very slowly. Kind of hanging back in the field. I went over to the coach to fill her in on his JRA. She yelled out to him to see if he was feeling okay, He said no. She called him off the field. Jacob was complaining that his hip was sore. (he never complained about that before) He sat out for a little while. I asked the coach to keep him in defense because the running is not so intense. When the game was over, Jacob did not complain about anything he said he had a lot of fun. He was excited that he did well.

At night, putting him to bed I asked him how he was feeling. He said pretty bad. He asked me if I could rub his knee. I am just wondering if he will be able to keep playing. I guess time will tell.

First Day of school

First Day of 7th grade, Fourth Grade and Pre-school!

Updated Knee picture

When I look at Jacob's knee in a picture it seems easier to see the swelling. You can see the left knee has some fluid building at the top of his knee cap. The left knee cap isn't as pronounced as the right one. It is so frustrating to see that since January being on Naproxyn, then indocin, adding methotrexate, a full knee synovectomy in March, then adding Humira back in June and it still looks like this. I know it can be worse. I am very grateful that his disease hasn't spread much beyond this. He has has finger pain, ankle pain, and wrist stiffness but nothing very noticable but this knee.

Of course the biggest and most concerning inflammation, which is completely hidden from everyones view is the uveitis. I am incredibly grateful that this is quiet.

Who would of thought that in 2004, almost 5 years later we are still fighting this disease. Time presses on and we manage it day to day.

Tomorrow Jacob starts fourth grade. Jacob will meet his new teacher. Who I have informed already about his condition. I sent in ahead of time the brochure from the arthritis foundation, Your student with arthritis, The teacher's handbook on Uveitis. And my own personal letter explaining his condition. I have found that the more informed the teacher is from the beginning the better it will be if any issues come up. With Juvenile arthritis the disease is so unpredictable.
Uveitis in itself is extremely unpredictable. Things can change with both diseases within the same day. Flare ups can come and go. Then there are the medication issues. The meds cause him to feel unwell at times and can make him tired. Then there is the risk of him catching viruses because of the immunesuppressants. When school ended in June he was just starting Humira. So now being on two immune suppressants it should be interesting.

One day at a time. One doctor's appointment at a time. A lot of playing in between, and I am very grateful for that!

The night before the first day of school...

And all is quiet! The three little men are all fast asleep in their beds. I think this is the first night in a long time I am sitting here quiet so early! I don't think I will be up too long though because I will be up early to get Andrew on the bus for 6:35 AM! The boys were all a little anxious going to bed tonight. Andrew mostly. He is in Junior High now. I can't believe it 7th grade. He will be in a new school with a rotating schedule that will take sometime to get used too. He will survive we all did! I will be glad to get the first day over with. Getting back into routine will be a little tough.

Labor Day weekend

What do you do on Labor Day weekend? Well we spent most of the day playing outside. The boys rode around on their scooters and ran around the neighborhood. While we were doing this all morning, on Labor Day weekend, Aunty Colleen had a labor Day for herself in the hospital. At 3:30pm we welcomed the newest little cousin to the mix
her name is Lacie Noelle. She came into the world weighing 8pds 8 oz. What a cutie! Her big sister is thrilled. (and in shock I think)

"a little fluid around his knee"

That is what Dr. Lopez told us today. I am not sure how to take that. He hasn't mentioned any fluid in last few visits. I think it means that there is still activity going on in the left knee. I had noticed last night that it did feel a little squishy. What that says is that he is not completely free of inflammation. I believe if he wasn't on meds right now he would have a big flare up. The meds are keeping it under control to this point. I told Dr. Lopez he is still favoring the leg and I can tell it is still bothering him. The doctor asked how many of the Humira shots he has received so far, of course I don't remember, I am thinking about six. The other joints checked out well today.

AS far as the back issues.. He said that the scoliosis is still only mild and he isn't too concerned about it yet. He measured the length of his hip to his ankles. He is about 1 cm off. He will be following it closely.

The next appointment will be at the end of October. The doctor wants me to contact him if anything comes up in the meantime, including the eye appointment if there is a change.

Humira shot # ????

I just gave Jacob him Humira shot. I am not sure how many I have given so far. I can say each time I do it, it is no easier than the first time. He is anxious, I am anxious. I still feel like I have no qualifications to give my child a medication of so much importance, via a needle. On the directions it says that I must pull back on the syriange after injecting to see if any blood is aspirated. Each time I have injected the needle I have frozen in fear of the process that all I can do is push in the med. What is the chance I am in a vein? Good question to ask the Rheumatologist tomorrow.

So relief another week down. Jacob happened to ask me this morning how much longer he needs these injections. I didn't have the heart to tell him for another two years. I said I don't know. So he then asked if we could maybe go three weeks in between shots. Sorry buddy, NO!

I will post tomorrow after we see the Rheumatologist.

The end of summer

Wow I can't believe one more week until school. Summer went by wasy to fast! I can say this summer Jacob has done extremely well. The arthritis hasn't been an issue for him. We have been keeping up the same medication schedule. Methotrexate 17.5mgs and Humira shot every other week. He has been getting slightly better with the shot. He is still very anxious and says it hurts terribly. I still get very anxious knowing the day is coming when I have to do it! This Wednesday is the next shot.

This coming Thursday is The monthly Rheumatologist appointment. I am anxious for the appointment because what concerns me is that I still think the arthritic leg is longer than the other one. He is still walking with it slightly bent. How do you try to correct a child who is walking wrong?? Not that easily! The doctor had mentioned a few weeks back that he was developing scoliosis. It is very noticable to me now. If you look at him from the back you can see how one shoulder is higher than the other. I am wondering if the doctor will order a scan to measure the bone lengths.

I will post on Thursday about the appointment. The next eye appointment, if anyone is wondering is September 17th.

Thanks for reading!
Leave me a comment if you want!

Donations

I just wanted to thank all of you who have made donations for the walk. we are getting close to our goal. I am hoping to maybe even go over the goal! :o)

If anyone wants to donate you can access the link easily to the right of the postings. Help us reach our goal and even surpass it!

Thanks!

Joanne and Jacob (Tufts Floating Hospital for Children Team)

just a little update

Jacob has still been doing pretty well. The only issue we had was he fell off his skateboard yesterday, right on his knee. It is bruised and a little swollen. I do notice it is slightly hot to touch. The thing with having Juvenile arthritis is that an injury can trigger a flare. Jacob being nine, has no fear of the what if's if he hurts himself. I worry about him falling on the knee but you can't hold a kid back. Why hold him back? This is his childhood. I am watching that knee though. Hopefully it will turn out to be nothing.

On a different note, Jacob has completed his first week of summer school. He is enjoying it. I am very grateful that he is able to do this. After such a hard last few months of school dealing with his arthritis, he needs a review. The summer school should get him good and ready for 4th grade!