Tuesday, March 15, 2011

Feeling Scared but Thankful

Nora had her appointment at the children's hospital for her arthritis last week and we got good news (that we kind of knew anyway) that she is in remission and doing just great. No sign of arthritis in her joints right now and her monthly blood tests have been looking fine. The doctor seemed pretty pleased to see that she was continuing to respond well to her medications because it's not always the case. For her current weight, she could even be taking one extra pill (7.5 mg instead of 5 mg) of methotrexate but 5mg has been working nicely. It's when he said that he'd be happy to have her continue on this same medication for the next YEARS that it hit me how serious the condition is.

She had a relapse when we reduced her medication over the summer and we hadn't seen the doctor since. They had just sent a new prescription to the pharmacy when this happened without seeing her. So when I saw the doctor, he said that this episode confirmed that she really had Still's disease which is a type of arthritis that has the potential to cause a lot of damage. He said it's very important that she not be in pain.

When I went online to search for Still's disease specifically (instead of juvenile rheumatoid arthritis only), I found a couple things. About a third of the people with it "outgrow" the disease about 10 years after being diagnosed. I'm thankful that this could be the case for Nora, but scared of her having to deal with it for life when she simply cannot be on her medication for all her life. I also saw the case of a woman diagnosed when she was a child who did not outgrow the disease and had it before methotrexate and other medications and she could not walk and had multiple surgeries. How thankful I was for Nora to have the disease NOW and not be born with it 50 years ago when it would have literally made her unable to function.

Anyway, I feel a huge blessing that Nora has this disease and yet is perfectly fine and functionning as any other child. But so scared about the future. I can never know if the medication will stop working like it does now. What will the other options be? What will her condition be? Will she ever be in a real remission that isn't maintained 100% by constant medication?

Anyway, I just needed to share these thoughts I'm having...

7 Comentários:

Amalia said...

oh gosh that does sound scary. Insha'allah Nora will be one of the lucky ones and she will be just fine. I'm sure it must be very worrying.

safaona said...

Insha Allah she will outgrow it and won't need methotrexate,that's so toxic.
Since you are pregnant be extra careful handling the pills,methotrexate can cause congenital defects when it doesn't lead to miscarriage

The Creative Muslimah said...

Assalamualeikum sis, your post made me sad, but inshAllah, as the sister mentioned above, she will be fine and inshAllah Allah will always help.

FIamanAllah

The Creative Muslimah @ www.thecreativemuslimah.blogspot.com

Candice said...

Thank you ladies. I will keep the positive outlook that everything might be fine and that she might not have to deal with it anymore past a certain age. But of course will stay prepared for a less positive outcome if it is to be that way.

Safona: Thanks, I will be careful... Poor Nora if she has to stay on this stuff for many years... It has been 2 years though and it's been a miracle for her...

new_VA said...

Insha'Allah,Allah will be merciful to her and your family. This will sound weird, but I think it's better for her to have it now, when she can begin to see it as "normal" for her life. I mean, I was diagnosed with Systemic Lupus Erythematosous when I was 23; my life turned upside down. I wasted a lot of years being angry with god for having "ruined" my life, because it was such a big change. Anyway, Allah has the way to make everything work out for us. May be bless her and heal her.

Candice said...

Thank you new_VA for that perspective. It's true that for her to be diagnosed as an adult would take quite a toll on her while having it young and dealing with it from that young age will make it nothing different than normal for her when she is an adult.

I'm sorry to hear about your affliction... May God make it easy on you.

Becky said...

I hope and pray she will recover fully, inshAllah.

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