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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.
Sunday, November 22, 2009
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 conditioning....talk about love for Hannah....talk about the ability to make my child happy with such a simple thing, I love her!
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 conditioning....talk about love for Hannah....talk 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,
L
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,
L
Saturday, November 14, 2009
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,
C H
----------------------------
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,
L
-------------------------------
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.
Thanks!
CH
-------------------------------
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,
L
-------------------------------
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: ?
Thanks!
CH
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,
C H
----------------------------
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,
L
-------------------------------
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.
Thanks!
CH
-------------------------------
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,
L
-------------------------------
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: ?
Thanks!
CH
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