newly diagnosed and have questions

Arthritis Foundation Forum

Home

Welcome Guest ( Login | Register )

Rate Topic

Display Mode

Topic Options

Author

Message

Jaci Novak

Posted Monday, August 10, 2009 10:48 PM

Group: Forum Members
Last Login: Sunday, August 23, 2009 3:46 PM
Posts: 4, Visits: 4

My 8 yr old daughter started with swelling in right knee. After bloodwork with pediatrician, consult with ortho (mri) and now the pediatric rheum...we were told today she has partic. arthritis. Dr also found her left wrist to be painful (my daughter rarely complains of pain....so I wasn't aware). Her bloodwork came back fairly normal. Can the diagnosis be given by clinical means only ? This dr came highly recommended but just double checking.

Post #4224520

Top

kim evans

Posted Monday, August 10, 2009 11:38 PM

Group: Forum Members
Last Login: Monday, November 02, 2009 12:05 PM
Posts: 12, Visits: 20

This is similiar to my 3 year olds case. She had swelling on her right knee and would not walk on it in the morning. We did x-rays went to an Ortho. We then went to our rheumatologist and he did blood work. Her inflammation levals were slighlty elevated. He also notcied her other knee, wrist, thumb, and top of the foot were inflammed. We did corticosteroid shots about 2 months ago and she is like a different person. So much happier. During the blood work from that she came back ana+ so we have to have her eyes checked every 3-4 months. During this whole time she did not complain about her other areas, just the knee.

If you do not feel comfortable get a second opinion. There is a great book called, Its just not growing pains. It is very informative.

Post #4224533

Top

Jaci Novak

Posted Tuesday, August 11, 2009 7:36 AM

Group: Forum Members
Last Login: Sunday, August 23, 2009 3:46 PM
Posts: 4, Visits: 4

thanks for your response. I'm usually all about second opinions but I just feel in my gut this is finally the right answer and the dr was wonderul with my daughter (and whole family....had to take all 5 of my kids Smile

and explained everything so well. We've been to so many appts for bloodwork, mri, dr's, etc. I'm just ready to accept the diagnosis and move on.

Post #4224564

Top

kim evans

Posted Tuesday, August 11, 2009 7:46 AM

Group: Forum Members
Last Login: Monday, November 02, 2009 12:05 PM
Posts: 12, Visits: 20

I gave you the wrong title of the book. There it is above.

Post #4224565

Top

Jaci Novak

Posted Tuesday, August 11, 2009 11:27 AM

Group: Forum Members
Last Login: Sunday, August 23, 2009 3:46 PM
Posts: 4, Visits: 4

thank you so much. my pediatrician talked to me today and isn't sold on the jra diagnosis because of the bloodwork. UGH. What I am reading, though, suggests that the bloodwork doesn't always need to be positive. her sed rate was only slightly elevated and her ana was 1:60 ( i believe...don't have the paper right in front of me). We were able to get in with the opthamologist for this friday which was wonderful. Normally this guy is very backed up but we got a cancellation.

Thanks again for your help.

Post #4224608

Top

kim evans

Posted Tuesday, August 11, 2009 5:08 PM

Group: Forum Members
Last Login: Monday, November 02, 2009 12:05 PM
Posts: 12, Visits: 20

At the time of my daughters injections her blood work said that her SED leval was an 8- this is considered normal. It was higher the previous month. You could tell her knee was inflammed and fluid on it because it was so swollen. We have to go back in three months for blood work. I know she is not in any pain now since we did the injections. I noticed on this board that every doctor is different with their treatments.

Her ANA results were 1:3

Post #4224680

Top

Juile

Posted Wednesday, August 12, 2009 8:43 AM

Group: Forum Members
Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134

One of the reasons jra parents become worriers is because there is a lot of "wait and see" with this disease. First you have to wait and see if it really is arthritis. If it doesn't go away in time, you will know. If your ped isn't so sure, a second opinion never hurts and a good doctor will not be offended by that. If it were there child, they would do the same.

Post #4224797

Top

Sonya459

Posted Wednesday, August 12, 2009 1:36 PM

Group: Forum Members
Last Login: Yesterday @ 3:31 PM
Posts: 82, Visits: 104

Jaci, I'm sorry you had to find us, but there is a lot of experience and support here that can help you on your journey. I am not sure if there is one particular thing the doctors look for to say this is JRA, but there are factors, such as a positive ANA, that help to confirm the diagnosis. I have heard of cases that the child does not have elevated bloodwork initially, but the other symptoms help lean toward this diagnosis. Eventually the bloodwork does catch up though. Mom insticnt is pretty good, so go with it.

Also, I have noticed that my daughter does not complain of pain often, but when we are getting checkups I watch her face for flinches rather than what the doctor is doing. I have been able to catch moments of pain that would have been missed if I had not been watching her; your daughter may be hiding her pain as well so keep an eye on her non-verbal language as well.

Good luck and welcome,
Sonya
Mom to Cassie, 5, poly, diagnosed 14 months

Post #4224854

Top

Tracy1

Posted Thursday, August 13, 2009 10:11 PM

Group: Forum Members
Last Login: Sunday, October 18, 2009 10:26 AM
Posts: 58, Visits: 20

I echo Sonya here.

At the practice where I take my daughter, they have they same philosophy - the bloodwork isn't a clear picture of whether or not it is arthritis and it is a very tricky dx to make. There are so many factors that come in to play as to whether or not it is arthritis. Now, they can do an MRI and see the actual arthritis, but that is a painful expensive way to do it. So my daughter only gets MRIs annually to check how her body is doing.

Tracy,
mom to Cassie (6) PsA

Post #4225192

Top

Jaci Novak

Posted Sunday, August 23, 2009 3:47 PM

Group: Forum Members
Last Login: Sunday, August 23, 2009 3:46 PM
Posts: 4, Visits: 4

Thank you so much for all your answers. Still looking for another ped rheum. to get the other opinion but otherwise doing pretty well. Again..thank you. It's nice to know there are those to ask the questions to.

Jaci

Post #4227011

Top

Jennifer Haveman

Posted Friday, August 28, 2009 11:20 PM

Group: Forum Members
Last Login: Friday, October 30, 2009 11:32 PM
Posts: 17, Visits: 19

I can understand how you feel about this. I have a four year old little boy that had slightly elevated levels so my pediatrician sent him to the specialist. SInce the first appointment I have found out that there are other things along with the JA. He has what you call a IGA deficiency, and also eosinofilic fascitis. I do not know what the numbers of any of the bloodwork results have been. I am going to a different ped now and am going to ask his opinion on getting another opinion on the whole situation. My son gets two shots a week and also prednilosone daily along with pain meds if needed. I feel like a walking drug store.

Post #4228164

Top

Anjie Vago

Posted Sunday, August 30, 2009 5:01 PM

Group: Forum Members
Last Login: Sunday, August 30, 2009 5:30 PM
Posts: 9, Visits: 9

This can be such a frustrating process! You want to just put a name on it and treat it and for your child to get better, but I'm learning that it's just not that easy with rheumatology. We are eight months past "diagnosis" (I use that term lightly!) and still fooling with meds, developing new symptoms, etc. So, I (and everyone else here, I'm sure!) totally understand how you feel ... and it's so nice to have found others in the same boat!

Post #4228479

Top

« Prev Topic | Next Topic »

All times are GMT -5:00, Time now is 5:44pm

Execution: 0.671. 74 queries. Compression Disabled.