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Maddie'sParents
Posted Sunday, August 16, 2009 12:27 PM


 

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Last Login: Sunday, November 15, 2009 8:13 PM
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Our 13 mo old daughter maddie was diagnosed with systemic onset jra in july. She was originally being treated with naproxen, then swithed to indocin. Results seem to be slow and change from day to day.Are we being to impatient? Or should we expect quicker results? This is our first child, and it has been very difficult to see her in pain. My wife and I was wondering if anyone else might have an infant dealing with systemic onset jra?
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dsk727
Posted Sunday, August 16, 2009 10:33 PM


 

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I am sorry Maddie has to deal with this at such a young age. My daughter has Systemic but she was diagnosed at about 2.5 years old. She was on Prednisolone for a couple weeks, and on Methotrexate and Folic Acid since March and now Enbrel since middle of May as well.

I hope her doctor can find a combination of medicnes that will give her some releif.

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Juile
Posted Monday, August 17, 2009 9:17 AM


 

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Naproxen and indocine are always the first drugs they try because they are the ones with the least side effects. Usually, the next step is to add methotrexate (or nowdays they are going to drugs like Enbrel - but my daughter had it before they used that drug).

It is really hard to see the pain and fevers and rash and I am really sorry you have to go through it. My daughter was diagnosed with Systemic JRA at age 5. She will be 10 next month and she is currently off all meds and doing great with her arthritis. This is a disease that children CAN and sometimes DO grow out of. It is a long and hard road to remission, but remission is possible. Hang in there, it takes what seems like forever to achieve a medicated remission (months), but I think you will see much better results once they add the more aggressive medications. Naproxen and Indocine alone are a waste of time, in my opinion, but I guess they have to try that first to see if her immune system will settle down on its own before adding the more aggressive drugs.

I will keep you in my prayers and hope for quick results for you and your family. Please feel free to post any questions you have here, we have a lot more systemic kids on the board than we used to. There is also another website that deals with Systemic JRA called stillsdisease.org. They have mostly people who have it as adults (adult onset Systemic RA is called Stills diesase), but they deal with a lot of the same symptoms.

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Maddie'sParents
Posted Monday, August 17, 2009 9:56 PM


 

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Last Login: Sunday, November 15, 2009 8:13 PM
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Thank you for the prayers and well wishes! The Dr is calling us tomorrow to talk about our concerns with meds.  It's been a difficult situation because we can not communicate with the baby as to what is hurting and what we can do to help.  Night time seems to be the worst.  We have to rub her feet and knees to help her sleep.  Do you have any suggestions for comfort measures that you found worked well?  My wife and I are not getting any sleep as it takes 2-3 hours at night to finally sooth the baby. 

It's encouraging to hear that you had sucess with your daughter being in remission.  We're very happy for you and your family that things got better. 

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Maddie'sParents
Posted Monday, August 17, 2009 10:00 PM


 

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Thank you for your thoughts and prayers.  I've noticed that alot of kids that had to take the MX need folic acid as well, is there a particular reason why?  How long has your daughter been on the MX and are you giving her injections?  It sounds like that might be our next step is to switch from Indocine to MX. 
Post #4225921
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Grandpavan
Posted Monday, August 17, 2009 11:51 PM


 

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Folic Acid is a member of the Vitamin B complex and Methotrexate destroys some Folic Acid.  Folic Acid not only is needed for proper nutrition but it also reduces the side effects of Methotrexate.  The link below gives a little information about this.  God bless.

http://www.ncbi.nlm.nih.gov/pubmed/15965822

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

Post #4225942
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Juile
Posted Tuesday, August 18, 2009 9:36 AM


 

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Last Login: Wednesday, November 18, 2009 12:48 PM
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Our daughter was on Mtx for a few years. We started out with an oral dose, but she couldn't keep it down and so we never really knew how much of the meds she was getting into her system. Once we switched to shots it worked much better. We gave them to her at night while she slept and it never really woke her up. That made our lives a lot easier. I have read posts from other parents that did have success doing the oral dose though, so I guess it just depends on the child. I never had to do the folic acid.... that might have something to do with the age of the child and blood levels. For comfort, we had naproxen and tylenol. Warm baths also seemed to help. I can't be as helpful with this aspect as I would like, since my daughter was older and able to verbalize and understand what was happening, but it sounds like the baby massages you are already doing is a good idea too. Maybe you could ask your doctor if it is ok to give the naproxen or tylenol about an hour and half before bedtime. I'm glad you are staying in close contact with your doctor. I had a doctor who let me call day or night with questions and concerns and I took full advantage of that at first. I bugged him constantly! I think having a doctor you feel comfortable with is really important.
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