Basis for Daily Ibuprofen

[JulieMc]

So, after reading many of the posts here about giving daily ibuprofen, I spoke/emailed our doc about it. She expressed concern about it affecting my son's kidneys. Then she sent me another e-mail asking why he had inflammation and needed the ibuprofen on a daily basis. I'm just learning about PANDAS so I don't feel I can state anything other than it causes inflammation in the brain/basal ganglia. Can someone give me a better explanation to give to her? I honestly don't like giving it everyday myself. Is there an alternative that anyone has used? I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

[thereishope]

Julie, if I give my PANDAS son Ibuprofen for symptoms, I think the longest I ever gave was for 2 weeks. I always give the minimum. There were times I gave it every 6 hours for a few days and then times I only had to give it once in the morning. I never gave it long term.

 

There are natural alterative such as quercetin and Omega 3's have some anti-inflammtory properties.

 

Here's this too...

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Q:I've read a lot about Ibuprofen, what can it do for my child?

A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules see http://www.latitudes.org/forums/index.php?...art=#entry46222

Edited February 5, 2011 by Vickie

[peglem]

So, after reading many of the posts here about giving daily ibuprofen, I spoke/emailed our doc about it. She expressed concern about it affecting my son's kidneys. Then she sent me another e-mail asking why he had inflammation and needed the ibuprofen on a daily basis. I'm just learning about PANDAS so I don't feel I can state anything other than it causes inflammation in the brain/basal ganglia. Can someone give me a better explanation to give to her? I honestly don't like giving it everyday myself. Is there an alternative that anyone has used? I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

Here is a recent paper that reviews the literature on PANDAS thus far. It explains the role of inflammation in PANDAS, but also offers what is known about PANDAS and I think it can give your pediatrician a better understanding of what you're dealing with.

[JulieMc]

Julie, if I give my PANDAS son Ibuprofen for symptoms, I think the longest I ever gave was for 2 weeks. I always give the minimum. There were times I gave it every 6 hours for a few days and then times I only had to give it once in the morning. I never gave it long term.

 

There are natural alterative such as quercetin and Omega 3's have some anti-inflammtory properties.

 

Here's this too...

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Q:I've read a lot about Ibuprofen, what can it do for my child?

A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules see http://www.latitudes.org/forums/index.php?...art=#entry46222

 

Vickie, thank you so much!! This is wonderful information. I don't know why I didn't think of quercetin. I take it myself for inflammation. ~shakes head~

 

Off to read this information...

[JulieMc]

So, after reading many of the posts here about giving daily ibuprofen, I spoke/emailed our doc about it. She expressed concern about it affecting my son's kidneys. Then she sent me another e-mail asking why he had inflammation and needed the ibuprofen on a daily basis. I'm just learning about PANDAS so I don't feel I can state anything other than it causes inflammation in the brain/basal ganglia. Can someone give me a better explanation to give to her? I honestly don't like giving it everyday myself. Is there an alternative that anyone has used? I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

Here is a recent paper that reviews the literature on PANDAS thus far. It explains the role of inflammation in PANDAS, but also offers what is known about PANDAS and I think it can give your pediatrician a better understanding of what you're dealing with.

 

Peggy, there was no link. I am very interested in this so I hope you repost.

[peglem]

So, after reading many of the posts here about giving daily ibuprofen, I spoke/emailed our doc about it. She expressed concern about it affecting my son's kidneys. Then she sent me another e-mail asking why he had inflammation and needed the ibuprofen on a daily basis. I'm just learning about PANDAS so I don't feel I can state anything other than it causes inflammation in the brain/basal ganglia. Can someone give me a better explanation to give to her? I honestly don't like giving it everyday myself. Is there an alternative that anyone has used? I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

Here is a recent paper that reviews the literature on PANDAS thus far. It explains the role of inflammation in PANDAS, but also offers what is known about PANDAS and I think it can give your pediatrician a better understanding of what you're dealing with.

 

Peggy, there was no link. I am very interested in this so I hope you repost.

Oh, sorry! Here: http://pandasnetwork.org/wp-content/uploads/2010/12/JrnlChildPharma-LeckmanKurlanMurphy1.pdf

[Megs_Mom]

We only use Motrin on an as needed basis as well. But we did add daily Omega's which have been shown to reduce inflamation. This does not prevent the use of Motrin when we have a blib, but we do try to reduce inflamation in any possible way, long term.

 

It's so hard to talk about this disease and sound intelligent, isn't it? Does the motrin help your child significantly?

[JulieMc]

We only use Motrin on an as needed basis as well. But we did add daily Omega's which have been shown to reduce inflamation. This does not prevent the use of Motrin when we have a blib, but we do try to reduce inflamation in any possible way, long term.

 

It's so hard to talk about this disease and sound intelligent, isn't it? Does the motrin help your child significantly?

 

So, what kinds of effects do you see when you do use Motrin? We already use Omega's daily. I haven't started using the ibuprofen because the doc expressed concern. And honestly, I don't really want to use it regularly myself.

[Malke]

 

So, what kinds of effects do you see when you do use Motrin? We already use Omega's daily. I haven't started using the ibuprofen because the doc expressed concern. And honestly, I don't really want to use it regularly myself.

 

Julie,

 

We started ibuprophen the day before we got the abx. I saw immediate decline in her agressiveness and anger outbursts and her 'grrrrr' sound. She slept better too, more deeply, which has been horrible for the last month or so. I'd been giving her 2 doses a day for the last four days and today I thought I'd bring it down to one, since I'm no fan of this stuff. Everything was great all day long but by late afternoon it was all back -- tantrum, physical agressiveness, grrrrr, angry at nothing, tic, OCD, everything so I dosed her at 5pm and she's heading back toward even-keel now, about an hour later. I'm not sure what to do in the long term, but for now I'm keeping with it. Hopefully we'll be able to phase it out some time soon...

 

best,

Malke

[JulieMc]

Thanks Malke for sharing your experience with it. I think I'm going to try quercetin and see if that helps. I am going to look at some other herbs as well.

 

Peggy, thank you SO much for posting that paper. It's wonderful and I am going to forward it on to our doc.

[smartyjones]

I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

 

julie -- sorry, i'm speaking from memory and may not have it really right -- you may want to carefully research if you are looking at white willow or willow bark ? -- could have that wrong, don't have notes in front of me -- i believe it has the same active component as asprin so you'd want to be careful if looking to give that to a child.

[JulieMc]

I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

 

julie -- sorry, i'm speaking from memory and may not have it really right -- you may want to carefully research if you are looking at white willow or willow bark ? -- could have that wrong, don't have notes in front of me -- i believe it has the same active component as asprin so you'd want to be careful if looking to give that to a child.

 

You are correct, white willow bark is where aspirin actually originated, although there is nothing remotely close to in aspirin these days. It does help with inflammation but probably won't be my first choice. Thank you so much!!

[Megs_Mom]

We only use Motrin on an as needed basis as well. But we did add daily Omega's which have been shown to reduce inflamation. This does not prevent the use of Motrin when we have a blib, but we do try to reduce inflamation in any possible way, long term.

 

It's so hard to talk about this disease and sound intelligent, isn't it? Does the motrin help your child significantly?

 

So, what kinds of effects do you see when you do use Motrin? We already use Omega's daily. I haven't started using the ibuprofen because the doc expressed concern. And honestly, I don't really want to use it regularly myself.

 

Well, just to reiterate, we don't use all the time. We try to use when a "blip" first starts (we have not had an exacerbation in a while, but if we did, I would not hesitate to use prednisone, despite my reservations about that drug) we use Motrin for a few days - up to about 7, if needed. At first we use it fairly regularly (6 to 8 hours) and then we dial down and see if the anxiety returns. Generally, we only need it for 3-5 days, usually with a respiratory illness.

 

For us, in a low level issue (we did not try in a serious place) the motrin just reduces the anxiety & let's her process things with ease. It's a startling difference actually. Sometimes, we can get away with just giving it at night - it keeps her from waking up in the middle of the night in a panic, and allows her to rest better.

 

I think the responsiveness of her OCD and anxiety (when it arrives) to Motrin is nothing short of astonishing. I should add that our dd has stomach issues, so we are extremely cautious, but I cannot argue the benefit.

[airial95]

My son is a patient of Dr. Murphy's, and she has us supplementing with Omega 3's every day. Once we started that, we've found that we only have to use the Motrin in extreme situations, and it hasn't lasted more than a day.

 

He takes some O-3 supplements (but it's hard, because he hates them all) and we've started eating/buying anything and everything that has Omega 3 in it, either natrually or fortified!