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khen

Does anyone else use Ibuprofen regularly? or heard of Dr. Frej near De

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HI, just wondering what other people's experiences are with ibuprofen use, the frequency of use, the results or safety of it? Our doctor has us giving it to our son three times a day for four weeks during a flare up to test out and create a timeline of symptoms while trying to determine if he has Pandas or not. It does seem to make a huge difference for our little guy but I am worried about the side effects. Also have been trying to find a doctor in the US to see us as we're from ontario without a knowledgeable pandas doctor. Due to costs I am looking for one that would not involve much travel. I saw Dr. Frej's name on the list here from detroit area. His receptionist says he'll see Pandas patients but other than that I have no knowledge of him.. Was hoping to find someone who has seen him to share their experience?

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Honestly, at first, I completely discounted the advil dosing "thing". That was until I tried it and I have seen it help, actually quite noticeably for my almost 5 yo and my 7 yo. I have not had the same experience with my older two affected (13 &14) but that could be due to keeping the dosing up. I do it 3 times a day (if I remember!) for a few days.

Sorry, do not know anything about Dr Frej. Hope it works out!

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HI, just wondering what other people's experiences are with ibuprofen use, the frequency of use, the results or safety of it? Our doctor has us giving it to our son three times a day for four weeks during a flare up to test out and create a timeline of symptoms while trying to determine if he has Pandas or not. It does seem to make a huge difference for our little guy but I am worried about the side effects. Also have been trying to find a doctor in the US to see us as we're from ontario without a knowledgeable pandas doctor. Due to costs I am looking for one that would not involve much travel. I saw Dr. Frej's name on the list here from detroit area. His receptionist says he'll see Pandas patients but other than that I have no knowledge of him.. Was hoping to find someone who has seen him to share their experience?

 

 

I am new to this forum . . . and I promise not to always answer by ruthlessly plugging my blog, however, I just had the same questions you have. Here are my experiences (hope you enjoy ) and what I discovered on the safety of ibuprofen: http://blog.thepandaseffect.com/2012/07/06/to-give-or-not-to-give--that-is-the-question.aspx

Edited by Aimee De Pooretere

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Our pediatrician has us in ling term ibuprofen. We dose 2 x a day...but have skipped the 2nd dose at times if its not needed. He has told us that as long as you din't exceed the daily recommended dose for their weight, side effects are a minimal concern.

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NIH put DS on aspirin 3x daily for a few months last summer, then switched him to ibuprofen in the fall. He was on ibuprofen 3x daily for seven months, with monthly labs to check kidney and liver functions. I have heard from others that this is not recommended. But we had four different docs involved and all told us to continue when they saw what DS was like with versus without. We tried to taper back off ibuprofen every third week and, when things hit the fan quickly, just ramped back up again and tried again in three weeks. He successfully tapered off ibuprofen in March.

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NIH put DS on aspirin 3x daily for a few months last summer, then switched him to ibuprofen in the fall. He was on ibuprofen 3x daily for seven months, with monthly labs to check kidney and liver functions. I have heard from others that this is not recommended. But we had four different docs involved and all told us to continue when they saw what DS was like with versus without. We tried to taper back off ibuprofen every third week and, when things hit the fan quickly, just ramped back up again and tried again in three weeks. He successfully tapered off ibuprofen in March.

 

how old is your son? I am amazed NIH put him on asprin! did they think it would work like ibuprofen? did it do anything?

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We use liquid ibuprofen per doctor less harsh on stomach and I also make sure they take with water and food. Makes me nervous too, but I can tell you PANDAS hurts. Not only does it help with mood as most of us report but it helps with the joint pain and headaches that come along with this disorder.

 

I really feel I overuse ibuprofen but my kids even ask for it.

 

I'm curious to know if arnica would help in the same way, a question for all the homeopathy experts out there?

 

Sorry I know I am not much help with Dr. Frej, but it seems Ibu is a friend to most families. Good luck.

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Not only does it help with mood as most of us report but it helps with the joint pain and headaches that come along with this disorder.

 

 

have you checked for lyme and other tick borne diseases? headaches and joint pain make me think Lyme first (not that it can't be seen with PANDAS).

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khen:

 

We consulted with Dr. Freij in the past for his expertise in infectious disease and PANDAS. Our impression was that he was patient and helpful, however his views on diagnosing and treating PANDAS/PANS may be more conservative than others. He spent a solid hour with us listening to our history and ultimately thought our timeline and symptoms and lack of positive titers ruled out PANDAS. Unlike some doctors we consulted, he was not outright dismissive but explained clearly the basis for his opinion. He also discussed with us his experience with IVIG, which is important to understand as doctors have varying protocols (e.g. see Dr K., Dr B., et. al.). You might also want to consider consulting with Dr. Chugani at DMC who is also nearby.

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ultimately thought our timeline and symptoms and lack of positive titers ruled out PANDAS.

 

so he's on of those guys that thinks you need elevated strep titers to have PANDAS? Ugh. dark ages...hopefully he has changed since you saw him?

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