Sunday, November 22, 2009

So far so good Sunday and a little bit of research.

It is Sunday night. Don't want to give a kinahurra....but it is almost 10pm Sunday night and Bean didn't have a ferver. Just taking note.

Google search alert came up with a report today. Dr. C. told me not to do my own research...but I feel like I need to know and need to learn...all these reports talk about the mortality rates of kids with SJIA - it isn't something we have brought up with the doctors yet, or have they brought up with us. But it is on my radar.

Here is the latest report.

Thursday, November 19, 2009

Over the river and through the woods to Children's we go...

We went back to Children's. Dr. H had a baby this week and he was out - so we met with Dr. J. I am so glad we made the decision to switch to Dr. H. His approach, his interaction with us and Bean....we made the right decision to switch. Don't get me wrong, Dr. J is a good Dr., he is patient...just nothing like Dr. H.

The plan. We increase Methotrexate by 50% to 15mg x1 per week. We went down on the prednisone to 15mg 1x per day. The rest stays the same.

We will see how it goes.

The memorable part of today's visit. Bean usually gets stickers after getting her blood draw in the lab. Because we went to Dr. C last week to draw blood, they didn't need to this week.

As we were leaving Bean asked to go to the lab - I almost laughed out loud...I had to explain to the nurses who looked at her, then looked at me, then looked at her again...that there was more behind the ask.

I said Bean, you don't have to have a blood draw to get a Hannah Montana sticker. Would you just like to ask Nurse Rachel for one? The smile slowly grew to include her entire face!!

My child was willing to get a blood draw, just to get a sticker. Talk about about love for about the ability to make my child happy with such a simple thing, I love her!

Sunday, November 15, 2009

Dear Dr H - what is it about Sundays....

Happy Sunday Dr. H, I hope this note finds you well.

I'm not sure what it is about Sundays...but Bean had a fever again this evening - and was complaining about hip pain and had trouble walking. Though she walked a mile each way to and from synagogue yesterday - and played outside with a friend today.

This is the third Sunday in a row that she had a fever and pain. I'm not sure what it is about.

As long as it is like the other Sundays and nothing more comes of it - we will see you as planned on Thursday at 10:40 am. I just wanted you to know what was happening here.

All my best,

Saturday, November 14, 2009

Dose 4

Bean's 4th dose came and went with little fan fair, just 4 extra pills on Friday night.

Monday, November 9, 2009

Dear Dr. H - Relapse Correspondence

Sunday - November 8th - 10am

Dear Mrs. S,

Does Bean have any additional symptoms other than the fever and joint pains? Runny nose, congestion, cough, vomiting, diarrhea, stomach pain? When you said she did not have her medicine before she fell asleep, are you referring to naproxen or prednisone? I am not sure about the origin of the back pain, is this a persistent pain?

I am concerned that this might represent early recurrence of the systemic JIA, particularly if there are no other symptoms suggesting an alternative, intercurrent illness, such as an upper respiratory infection or gastroenteritis. If the back pain is persistent, we have to investigate this further.

I would like to obtain lab tests, if possible, tomorrow (Monday) this will include a CBC with differential count, ESR, CRP, comprehensive metabolic profile, CK and ferritin. Please let me know where is the best place for you to get them drawn, either at CNMC or at an outside lab. I will be able to order those labs first thing in the morning.

In addition, I would like to re-evaluate Bean in the clinic this week, unless symptoms quickly and completely resolve. We will schedule an urgent follow-up appointment for you (M, can we schedule this tentatively? The earlier the better during the week). No change in medications at this time.

Best regards,

Sunday - November 8th - 11:30am

Thank you for getting back to me, and so quickly!

Last night she had congestion - she blew her nose a few times and she felt better. She had no other symptoms. And this morning she is running around as if nothing is wrong.

The medicine she didn't have before bed was her (we gave it to her at 3am):
20mg of prednisone
15 mg of prevacid
1mg Folic Acid
250mg naproxen

Her back pain is not persistant. She said "it comes when I get tired - like when my legs hurt." Interperating a 5 year old is difficult - but what I take that to mean is when she is lethargic - her word is tired. She becomes lethargic and her back and legs hurt.

I can take her into our pediatrician first thing tomorrow (Monday) and ask the doctor to run the tests that you asked for. I will bring the e-mail - but his (Dr. C) phone is: and his fax is:

We can bring Bean in Tuesday or Thursday morning - just let us know what you have available - my cell number is:

Thanks so much,


Monday - November 9th - 8:00am

OK, that sounds good I will contact Dr. C as well. I would suggest that Dr. C also takes a look at her to determine there is no obvious source of infection (ear infection, pneumonia etc.). Let’s just be on the careful side while we taper the steroids. The fever might have occurred because she missed a dose of prednisone. Actually, I was going suggest to you to have her take the prednisone in the morning rather than in the evening since this mimics the natural circadian rhythm of steroid secretion, and, also, it might cause less side effects on sleep and emotional lability.



Monday - November 9th - 12:00pm

Dr. H - we saw Dr. C this morning. Bean seemed fine. She hasn't had a fever since that one early sunday morning. She doesn't have an ear infection, no soar throat, we are waiting to get a urine sample. Dr. C did all the blood work that you asked for.

She went off to school.

Should we move her meds to the morning?

Thanks for your support,


Monday - November 9th - 4:40pm

Mrs. S,

I was trying to call Dr. C’s office but could not get through (it does not give me the option to leave a message either). Is there another way for you to contact them and have the lab report faxed to: ?


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.

Sunday, November 8, 2009

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,

Saturday, November 7, 2009

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 is too much.

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

Monday, November 2, 2009

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.


Sunday, November 1, 2009

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