How To Use Advil During A Flare

[cobygurl]

Hi,

 

Feeling a little frustrated and or sad tonight.

 

My little guy has been in a flare for the last couple of days and so today I tried giving him Advil.

 

It definitely helped with his anger.

 

Can any of you weigh in on how you use Advil during a flare. Do you start it as soon as you suspect that your child is going into a flare? How long do you use it for? If you don't use it to decrease the inflammation, are you almost assured of some sort of damage?

 

His main symptoms are ticcing and anger. Do your kids still tic at excitement, videos and or reading? It seems that that is part of TS too...so confused right now.

 

I spoke with Dr. T about a week ago and he mentioned that he goes for 85% better? My child is definitely 85% better on Acyclovir but he will be finished his 3 refill this in a few days and I am terrified of regression. Have any of your children gone into complete "remission" for lack of a better word?

 

Is part of your process still giving Advil during any aggravation?

 

My little guy is only 5, right now I an feeling scared about so many years ahead of us with the possibility of this getting so much worse.

 

Sorry for being such a downer, just feeling a little hopeless this evening.

 

Thanks to everyone for all your ideas. Don't think I could get through this without this forum.

 

Any advice would be appreciated...please.

 

Thank you!

Edited July 3, 2013 by cobygurl

[LNN]

First, yes, some of us do see complete remission, so try to put those fears to rest. As horrible as this disease is, it isn't permanent/forever. Among the friends I have whose kids are in remission (after repeated flares) there is no residual damage. They are healthy, happy kids.

 

The trick is fully treating all chronic infections that are triggering the symptoms. Sometimes, this means a long time spent peeling an onion of issues, which can be really frustrating. But when you get to the bottom of things, you can get your child well.

 

My DS was 6 when all this hit. He's almost 11 now. It boiled over with strep but Lyme was underneath it, as well as a genetic issue that causes a zinc/B6 deficiency. So it took a long time to treat (4 yrs combo abx, plasmapheresis, IVIG, prednisone tapers, many nutritional supplements, yeast treatment) but he is finally enjoying the trials and tribulations of being a normal kid.

 

When we've used ibuprofen, we dose it every 6 hours while things are rough, including a dose at school given by the nurse. (we didn't exceed 3 doses/day). It helped a lot with anger and impulsiveness. We also use milk thistle, which helps the liver detox. Ibuprofen is processed through the liver so long term concerns involve stomach upset and liver toxicity. But I don't think that's an issue if used for a few weeks. Once things calm down on a reliable basis, we back down to twice a day and then once a day. I personally jump on it right away and give at the first sign of issues. Inflammation is a chain reaction and releases cytokines that act like a K-Mart blue light special, drawing more cytokines to the area, further increasing inflammation. So I view ibuprofen as a cop who does crowd control, telling the cytokines to "move along, nothing to see here". In a crisis, you have a cop stationed around the clock, IMO.

 

I used to joke that I was the only mom (aside from others here) who looked forward to puberty because that would mean a reduced risk of Pans stuff. Now as puberty looms, I'm having second thoughts! But I can tell you that in 5 years, things never got as bad as the first few episodes when we had no medical support. Once we had someone who understood and was willing to provide abx and other support, we had a safety net. Not to say things didn't get ugly during lyme herxes, but never as bad as those first few episodes when I felt I was losing my child to madness.

 

Ibuprofen still helps when DS is feeling a little off. I wouldn't be afraid to use it on a regular basis. Inflammation damage is far worse and so long as you stay within dosing guidelines and with a doctor's supervision, I think it's a tool that should be used at the first sign of trouble and used for the majority of a flare.

[cobygurl]

Hi LLM,

 

Thank you so much for replying! We used Advil for 3 days and by the 4th day, DS woke up and was back to his normal self! Honest to goodness I probably should have used it at least 2 days earlier but I was hoping it would resolve on its own. Amazing enough on the Advil all rage and motor tics disappear!

 

Curious but hav you tried any natural remedies for inflammation? We just recently started a Pleo remedy (homeopathic) for inflammation and I'm hoping it might act in the same way as Advil does for DS 5.

 

If you don't mind, would PM me the names of the doctors you have found helpful to you. I have seen several and am planning on booking a consult with another. I just don't want I be missing anything especially since this has now been going on for a year.

 

Thank you so much!!!