One month out...

One month ago today Bean was diagnosed.

I keep praying that this illness is like labor, the pain keeps coming - you don't know when - but at somepont it ends and you couldn't be happier.

I keep praying that the medicine she is on will be all she needs and it won't come back.

I keep praying that she is in the 1/3 of children who outgrow this.

I keep praying for the strength to be her support and not for her to see me crumble.

I keep praying for knowledge and strength so that J and I can make the best decisions we know how.

I keep praying. May god watch over and protect my baby.

And the fever returns...and the pain.

Did I speak to soon? At 3am Bean walked into our room...with 103.2 fever, back pain and knee pain. Is it related - is it something different?

Here is my e-mail to Dr. H.

Dear Dr. H,

Thank you for the e-mail and the follow up. The week went well. She started the naproxen on Monday - 2x per day. And here week went well.

Friday she had her 3rd dose of methotrexate and we dropped her dose of prednisone down to 20mg 1x day - from 25mg 1x day (as it had been 2 weeks).

10mg of methotrexate x1 per week
20mg of prednisone x1 per day
15 mg of prevacid x1 per day
1mg Folic Acid - x1 per day
250mg naproxen - x2 per day

Early this morning (Sunday morning) - 3am - Adina came into our room - saying her back hurt, and knees hurt. I picked her up as she couldn't climb into the bed and I realized she was quite hot. She had 103.2 fever. We realized that for the first time, she hadn't had her medicine before she fell asleep - we gave her the medicine and she went back to sleep.

I'm not sure if it was a coincidence that she got the fever and hadn't had her medicine - one dose.
If this is an unrelated illness...
What this back pain is about - lower back pain.

You had asked about the rash in your last e-mail. I'm not really sure if it has come back. It is SO hard to tell as her cheeks are often red from the steroids. And the phantom rash comes and goes so quickly. There have been a few times I think I have seen it, but I can't be 100% sure.

What are your thoughts?

Thanks so much,
L

Dose 3

Friday night Bean got her third dose of methotrexate. Again she didn't have any rection...I have to say handing my daughter 12 pills brings me to tears...it is too much.

But she didn't have any reaction. Life is good.

The Dr's Response...

Dear Mrs. S,

Thank you for the update.

Her numbers from the last bloodwork looked good (sorry, I thought you were called about them).

Specifically, her hemoglobin has improved from 9.9 to 12.0 (anemia has resolved), plt decreased from 580 to 436 (good), ESR went from 103 (extremely elevated) to 20 (normal), CRP went from 9.9 (very high) to 0.06 (very normal, normal < 1.0). The ESR and CRP are the best markers for inflammation, and they are normal now, this is very positive. Kidney, liver and muscle-related enzymes are all normal. Tests for Epstein-Barr and Cytomegalovirus were negative. These test results corroborate the impression from the last visit that her disease process was entirely controlled.

The symptoms you are describing (pain in legs, back and head) are unlikely to be symptoms of any of the medications in particular. Lethargy/feeling unwell is sometimes seen after methotrexate but I would expect it to occur immediately but not with a delay of 24-48 hrs.

Why do you think she has trouble sleeping? Is it because of pain? Or is it because of agitation? Sleep problems can occur with corticosteroids but I was hoping for this to improve with once daily dosing in the morning.

I agree with continuing the naproxen twice daily for now while she has these symptoms. Did she have any recurrence of fevers or rash? While we taper corticosteroids, a recurrence of her s-JIA is also always a consideration but I would think this is somewhat unlikely given that we have not tapered very much. I would suggest for the time being to continue with the current treatment plan. If these symptoms should persist or worsen, or if fevers/rash should recur, I would like to see her back in clinic earlier than the planned four weeks. I would also consider to get repeat blood tests earlier rather than in four weeks, so we can pick up any early signs of inflammation.

C H

Dear Dr. H - Dose 2

I composed this e-mail to Dr. H at Children's today.

I wanted to update you on how Bean is doing at see what her results were from her bloodwork from the last visit - what did her numbers look like?

We saw you on Thursday, October 22nd - up until that day she was taking:
25mg of prednisone x1 per day
250 mg of naproxen x2 per day
15 mg of prevacid x1 per day

Bean had her first dose of methotrexate on Friday, October 23rd - she had no reactions that we could tell.
we stopped the naproxen as a trial.
For the past week she has been on -
10mg of methotrexate x1 per week
25mg of prednisone x1 per day
15 mg of prevacid x1 per day
1mg Folic Acid - x1 per day

Bean had her second does eof methotrexate on Friday, October 30th - she had no reactions that we could tell.

However - today, November 1st, she was quite lethargic and tired, she complained of pain in her legs then back and head. Do you think these are these side effects of any of the medication she is on?
I think tomorrow we will start back with the naproxen x2 per day and see how she does. But I was concerned with the pain symptoms she is having.

Also- she has been having trouble sleeping. I think she has only slept through the night 3 times in the past two weeks. Could that be a side effect of the medication?

Thanks for all you help and support,

L & J