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How long Can I do Ibuprofen?

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My daughter (age 4) had her first noticeable flare with what we believe is PANDAS about a year ago. Many doctors visits and no one was able to help us. We finally got in to Dr. T in NJ when she made a drastic improvement on her own (6 months after initial onset), so we decided not to follow up with him. Now, 6 months later, it all came rushing back. I’m trying to get into doctors appointments again. While we wait, I tried giving her ibuprofen 2xday for three days and she was 100% back to normal. Miraculous. Now, 36 hours off ibuprofen, symptoms are back. How long can I give her ibuprofen for? I realize this is not a long term solution. She’s currently not on any other meds except for a probiotic. And, I’d love to hear how people successfully battle these flares so I have some background to go into our specialist appointments with. Is it always a course of abx? Thank you. I’m so frustrated we’re back in this nightmare. 

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Hi. I'm so sorry that you are going through this. The PANDAS pediatrician that we see puts his PANDAS kids on ibuprofen permanently. Our integrative doctor disagrees. If it were me, and I was awaiting further treatment and the ibuprofen was helping, I would keep my kid on the ibuprofen until until my next appointment- which of course I'd try to schedule as soon as possible. Also, we have found that epsom salts are also really helpful.  I hope you are able to see a doctor soon.

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Thank you for your reply. I really appreciate it. We are waiting on a neuro appointment when they call me back to schedule, and am appt with Dr. L. Unfortunately we don’t have any PANDAS/PANS friendly docs in my area. I searched endlessly last year for 6 months. It’s a hopeless feeling to not be able to get help. Anyway, I am so surprised one of your docs said Ibuprofen is ok indefinitely. And I was worried about a week! I just don’t know what to expect from these flares...how long they last, are abx necessary, can Ibuprofen shorten the duration (or is it only a band-aid), etc.? 

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A new study just came out about ibuprofen use and PANS. You can find it on the PANS network site- I'd post it here but I'm in the car and can't find at the moment.  It details how it effects flare duration. My dr who uses aleve also monitors the liver regularly (every 6 months) to monitor effects.

Before we began antibiotics my son's flares lasted about four months and then we saw gradual improvement. If you're trying to learn more, I found the statement island PANS conference (on YouTube) very helpful.

Where do you live?

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Thank you for your reply. I really appreciate it. We are waiting on a neuro appointment when they call me back to schedule, and am appt with Dr. L. Unfortunately we don’t have any PANDAS/PANS friendly docs in my area. I searched endlessly last year for 6 months. It’s a hopeless feeling to not be able to get help. Anyway, I am so surprised one of your docs said Ibuprofen is ok indefinitely. And I was worried about a week! I just don’t know what to expect from these flares...how long they last, are abx necessary, can Ibuprofen shorten the duration (or is it only a band-aid), etc.? 

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I was also surprised about a doctor advocating indefinite ibuprofen use.  I hope that mountainmom can give us the link she was referring to, because I have not found it on either pandasnetwork.org or pandasppn.  But I did find this paper that talks about long-term prophylactic use, maybe this is what she was referring to:

http://online.liebertpub.com/doi/10.1089/cap.2016.0193

An important part of the question is dose.  Some who have been doing short bursts of ibuprofen have also been doing higher and/or more frequent doses.  But there are doses and times and liver checks all wrapped into the paper above, so even if it's not the research mountainmom meant, it looks like good solid info.

Our kid didn't respond to ibuprofen, so I never pursued it.  But I would be asking the same questions as you if it would have worked.  Good luck!

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OP here - for some reason my earlier reply re-posted. Not sure why...sorry about that. Thanks again for the links and suggested reading. I will look into it. I have a neuro appointment on Friday, so I will certainly be bringing this up. We're located in a suburb of Philadelphia, and it has been a STRUGGLE to say the least to find a PANDAS friendly doc. We have driven to northern NJ, Baltimore, Wilmington, and all over the Philly suburbs to get help. 

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That’s a very interesting article. Thank you for finding it and sharing it. The difference we’re seeing with my daughter is absolutely night and day. It’s nice to have my observations validated. 

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We used it for about 14 months but DD immune system started reacting to it. First was her thyroid and then the liver. She weighed about 100lbs and was taking 200mg. After stopping 3 months her liver and thyroid numbers cleared up. Obviously dosage and weight have an affect.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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