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!