kc35 Posted October 21, 2013 Report Share Posted October 21, 2013 LLM suggested that I try giving my DD6 Motrin 2 to 3 times a day to reduce inflammation. I just wanted to make sure I understood the logic. It is to reduce inflammation and then possibly reduce OCD/tic symptoms. This then suggests that the symptoms may be caused by PANS/PANDAS inflammation. Have any of you noticed the effect of Motrin on reduction of such symptoms? Have the PANS/PANDAS doctors suggested this ? How much should I give, for how long and how often? I have only ever given my child tylenol 2x since she has hardly ever had a high fever for any length of time. Also the lyme test I am getting done is Lyme IGG/IGM Titer with Reflex. That's all my doctor would agree to at this point. Is this the ELISA test? I am in the very beginning stages of determining whether my DD has PANS or Tourettes+OCD. As a result I feel unsure of myself, especially not being under the guidance of a PANS Dr. Hopefully by the end of next week, I will have the test results for the lyme (IgG/IgM), strep (anti DNase B and Antstrep O) and myco P (IgG/IgM) titer tests , and therefore I will have a better picture of what is going on. I appreciate everyone's time answering my questions. Link to comment Share on other sites More sharing options...
bigmighty Posted October 21, 2013 Report Share Posted October 21, 2013 DS was on ibuprofen for quite a while a few years ago. If we gave it to him 3x daily, he was able to function in the world, to some degree. Without it, he could not touch doors and could only walk single file. The reduction in brain inflammation caused by his taking the ibuprofen made a significant difference in functioning. Link to comment Share on other sites More sharing options...
peglem Posted October 21, 2013 Report Share Posted October 21, 2013 Just wanted to be clear- tylenol and ibuprofen are not the same. Tylenol does not reduce inflammation, and it reduces glutathione that the body needs to detox. We have used ibuprofin (motrin is a brand name) frequently here as well. Use the label instructions for dosing. I do not have info on the lyme testing. Link to comment Share on other sites More sharing options...
airial95 Posted October 21, 2013 Report Share Posted October 21, 2013 Both of my kids are on daily motrin. They take a single dose (for their weight) in the AM, and on school days, a second dose in the afternoon. When they are doing really well, we eliminate it. But for flares, it has been our lifesaver. It can curb tantrums quickly and make them functional. We often use it when we have events or functions to attend as a precaution. (For example, the big family Thanksgiving gathering). My son especially can get set off easily in crowds, so pre-emptively giving it can fend off (or at least minimize) something setting him off when we're there. Our PANDAS docs have both recommended it, and our ped has said that as long as we don't exceed the recommended daily dosage (which we don't), it is fine longer term. He does regular labs however on both kids to make sure everything is working just fine with ALL of our meds (kidneys, liver, etc...) Link to comment Share on other sites More sharing options...
beeskneesmommy Posted October 21, 2013 Report Share Posted October 21, 2013 I used to use Ibuprofen at thte start of seeing a flare, and back in the bad old days, when the regular daily living of constant flare seemed to get worse. I gave my son the typical dose for his weight 3 x D (every 6 hours) to start for a couple of day, then tapered it to 2 x D for about 3 more days. I was careful not to keep it up in too concentrated a time as he was on abx daily and Ibuprefen is tough on the stomach and liver. 8/10 times I saw a difference for the better. The idea is that since it acts as an antiinflammatory, it assists with the inflammation in the body/brain theoretically caused by the PANDAS flare. Please note that i am not a physician and I am not giving you medical advice. Rather, just telling you what worked for us. Link to comment Share on other sites More sharing options...
msimon3 Posted October 21, 2013 Report Share Posted October 21, 2013 You should confirm with the ordering doctor if you are getting the ELISA, and if they cannot confirm then you may need to find another LLMD Kidding aside, if the test is like this one, then it is an ELISA followed by a Western Blot *if* the ELISA is positive: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6646 Generally if you see "EIA" or "C6" on your test order or description, then it is the ELISA. SSS 1 Link to comment Share on other sites More sharing options...
mama2alex Posted October 21, 2013 Report Share Posted October 21, 2013 I think that Lyme test is through Quest?? A better option would be Igenex testing. If you haven't given her abx yet, your best bet would be to run a Lyme culture through Advanced Labs, in addition to testing for coinfections through Igenex (VERY important to run co-infection tests). If at all possible, please get her to an LLMD asap to be tested for all possible infections. Even if you have to drive a few hours, it will be worth it. You won't have to deal with anyone not "believing" in this at a Lyme doc's office and once you know what infections you're dealing with, you'll be in a much better position to help her. Frankly, I don't buy the "just Tourette's" or "just OCD" diagnosis any more. I think there is something medical going on with all these kids. It's just a matter of figuring out what it is. Link to comment Share on other sites More sharing options...
MPS1978 Posted October 23, 2013 Report Share Posted October 23, 2013 Dr. L's view is that Motrin temporarily closes the blood-brain barrier, which temporarily prevents the autoantibodies from attacking the basal ganglia. Link to comment Share on other sites More sharing options...
Agnes26 Posted October 23, 2013 Report Share Posted October 23, 2013 Not to hijack, but DD is having IVIG tomorrow. I know she'll get tylenol. What's the reason for tylenol and not ibuprofen with IVIG? Link to comment Share on other sites More sharing options...
T_Anna Posted October 23, 2013 Report Share Posted October 23, 2013 Not sure, but we just had IVIG today (our 4th) and we have never given Tylenol. I believe you can ask the nurse to give ibuprofen. T.Anna Link to comment Share on other sites More sharing options...
T_Anna Posted October 23, 2013 Report Share Posted October 23, 2013 (edited) Duplicate post Edited October 23, 2013 by T.Anna Link to comment Share on other sites More sharing options...
Agnes26 Posted October 23, 2013 Report Share Posted October 23, 2013 Not sure, but we just had IVIG today (our 4th) and we have never given Tylenol. I believe you can ask the nurse to give ibuprofen. T.Anna I'm going to. I hate Tylenol. Link to comment Share on other sites More sharing options...
T_Anna Posted October 24, 2013 Report Share Posted October 24, 2013 Will IVIG be at home or an infusion center? I would bring a bottle with you. Good luck. We had the best experience so far! T.anna Link to comment Share on other sites More sharing options...
airial95 Posted October 24, 2013 Report Share Posted October 24, 2013 We have always used Ibuprofen for IVIG. Link to comment Share on other sites More sharing options...
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