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Posted

Motrin is another company I have contacted, letting them know how their med helps our kids. I mentioned how they could have a good study on their hands and a whole need marketing angle. No response....but it doesn't mean they didn't read it.

Posted

re: motrin/Advil--Both daughters have been in exacerbation ups and downs for the past months (another story...) But, this weekend I am giving them advil on a regular basis (yes, I know, not to be done long term--) but these few days, every 6 hours (as noted on the label for their ages) and it seems to be helping. In the past, I have only ever used it once or twice a day, but 3 to 4 times a day today seems to have really helped.

What else would help with this--THAT is the real question--

Posted

What else would help with this--THAT is the real question--

 

yes -- exactly!! what is it that it is doing?? we've been giving it -- just one dose works wonders -- for parties, events etc. it makes it much more enjoyable for all! but - it does make me wonder.

 

yesterday, he was having trouble playing a game, so upset when things didn't go his way. i got him on tape after just talking about it was clearly upsetting. then gave motrin and played the game later. i planned on playing just an hour after -- wasn't until about 3 hours after but still fairly dramatic results.

 

i just don't know -- is it brain inflammation, BBB tightening, something else -- what?!

 

only neg is family we don't see that often just thinks i'm overreactive, crazy mom -- because they don't see what i'm talking about -- but that's okay, i'll just roll my eyes.

Posted

Here's a passage about NSAIDS, including Ibuprofen, from a book on Lyme Disease I've been reading (this book mostly focuses on the immune system in the context of Lyme, and has been a great resource for better understanding how the immune system works and how to support it):

 

"All NSAIDs work by blocking the ability of an enzyme in the body known as cyclooxygenase (COX). COX enzymes produce substances known as prostaglandins. There are two types of COX enzymes - COX I produces helpful prostaglandins that protect the gastrointenstinal tract, and COX II produces pro-inflammatory prostaglandins that lead to pain. The goal of NSAIDs is the reduction of COX II prostaglandins, but unfortunately, helpful COX I prostaglandins are also inhibited. (The exceptions would be the medications rofecoxib and celecoxib, which are selective COX II inhibitors.)

 

Since COX I prostaglandins help to protect the stomach lining and are important for proper clotting, the use of NSAIDs can, over time, lead to gastric upsets and bleeding. Other side effects that can be caused by NSAIDs include constipation, diarrhea, dizziness, drowsiness, headache, loss of appetite, nausea, rashes, and vomiting. NSAIDs can also cause fluid retention, leading to edema, and lead to kidny failure, liver failure, ulcers, and prolonged bleeding after an injury of surgery. Additionally, NSAIDs can also result in diminished immune function. Therefore, they should be used with caution and only under the supervision of your physician."

 

As I'm sure most here know, the largest part of the immune system is in the mucosal lining of the gut. So it feels risky to me to give a child who has severe immune system issues a medication that can damage the gut lining. Our DAN doctor has also warned us to stay away from NSAIDs as much as possible.

Posted

Thanks SmartyJones and Mama2Alex--I appreciate both posts.

 

It is a puzzle. Do we risk causing intestinal issues via these "treatments" of abx, advil, or other problems caused by steroids/IVIG/pex -- I know the issue, for us, quickly becomes what is "worth it" to get back to a "normal" childhood again...

 

After 2 long years of treating this monster I am ready for my kids to have a REAL break.

Life has risks.

Posted

Tmom- I agree, it is a constant risk versus benefit tightrope. When they are ok, it is hard to contemplate- when they are in crisis, little contemplation is necessary.

Posted

We use the motrin very sparingly, but are still amazed by how well it works. In therapy we're currently working on our sons fixation on the number 5, so on Thanksgiving morning, he had about a 45 minute tantrum because there weren't 5 pancakes with his breakfast (we are not allowed to give him anything in 5's for the ERP and then we just have to ride it out...love it!) He did ultimately calm himself, was still angry at his breakfast, but eventually after over an hour ate the 3 pancakes. Since it was Thanksgiving, we opted to "motrin him up" him before we left for dinner just to be safe. Good call, because he was great, eventhough he refused to eat anything on his plate because the turkey was "broken" and we couldn't fix it - but it was a calm refusal - no meltdown. (Don't ask me what broken turkey looks like, I still have no clue!)

 

On Friday when I dropped him off at day care, I told the teacher who was there that he was off the day before, and if he starts to give her problems, they have motrin and a dr's order, don't be afraid to use it. (she normally has limited contact with my son, but since it was a holiday with reduced staff, she would have him all day) I swear she looked at me like I had a third arm growing out of my head.

 

When I saw her this morning, she came right up to me and told me how AMAZED she was that the motrin worked on Friday. After chasing him down all morning trying to prevent him from hurting himself or others (his new thing is head butting - always fun) she finally caved and called for the Motrin. She admitted she didn't think it would work, but she was willing to try ANYTHING at that point (haven't we all been there!!) She said within 15 minutes he was a different kid - polite, calm, interacting appropriately with the class and teachers. She was floored.

 

I told her - it was MAGIC!!!

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