Ibuprofren lasting/ big change

[Darby]

I have suspected for some time that my daughter has PANDAS although she has no official diagnosis. I have read much about ibuprofren and PANDAS, so yesterday when she started exhibiting many signs of a "flare up" I think in response to a cold---I decided to try children's ibuprofren. 1 hour after taking it I thought it wasn't going to work, but she had mostly stopped crying. Two hours later she wasn't yelling as much and could play with out me next to her, although she was still very cranky and tired, by the evening she seemed almost better and today she seems normal except for a vocal tic, small compulsions and a little bathroom issues, but her mood is great in comparison to yesterday night and day. Has any one else noticed such an impressive change--how long does it last? Is it possible it was just a coincidence? I would love to hear other people's experience. By the way, I know ibuprofren is difficult on the digestive tract and liver and I have no intention of using it long term.

 

Thank you,

Darby

[butterflymom]

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Edited February 3, 2016 by butterflymom

[Malke]

Hi Darby,

 

Earlier this month we were in the middle of an ice storm and I was begging the pediatrician to start dd on abx ASAP, and I started ibuprophen the day before we got them just out of sheer desperation. I too saw really good results, and realized then I really needed to focus in on figuring out what to do next. It's been over three weeks now and I still have to give it to her twice a day -- morning and night. I am hoping to reduce it to 1ce a day and phase into something called Enhansa, which is made from curcumin and is a powerful anti-inflammatory (also a yeast fighter, so some extra issues come with using it, but I think it'll be worth it).

 

I'm glad you found something to help with the symptoms. Have you tried to get some abx going?

 

Malke

[nicklemama]

We see this. My DS is on long term antibiotics but still has "mini flares". I use motrin to subdue the flare. DS's PANDAS dr recommended it. I give the dosage for his weight every 6 hours, except during sleep, for two or three days. It ends up he gets 3 doses a day. Do not exceed 3 days. Use it only when you really need it.

[Darby]

Thanks for the reply. We are not pursuing abx at this time, but we'll see if she goes through another really bad spell. Are you saying that Enhansa kills off yeast, or causes the yeast population to grow, because killing off yeast would be a bonus for us.

 

 

 

Hi Darby,

 

Earlier this month we were in the middle of an ice storm and I was begging the pediatrician to start dd on abx ASAP, and I started ibuprophen the day before we got them just out of sheer desperation. I too saw really good results, and realized then I really needed to focus in on figuring out what to do next. It's been over three weeks now and I still have to give it to her twice a day -- morning and night. I am hoping to reduce it to 1ce a day and phase into something called Enhansa, which is made from curcumin and is a powerful anti-inflammatory (also a yeast fighter, so some extra issues come with using it, but I think it'll be worth it).

 

I'm glad you found something to help with the symptoms. Have you tried to get some abx going?

 

Malke

[Malke]

Thanks for the reply. We are not pursuing abx at this time, but we'll see if she goes through another really bad spell. Are you saying that Enhansa kills off yeast, or causes the yeast population to grow, because killing off yeast would be a bonus for us.

 

It will create yeast-dieoff, which is why they suggest you start slowly. We have not yet tried it (starting this weekend) but I have friends who have found great results with it as an anti-inflammatory.

 

Just a thought: I am not a big fan of abx, to say the least, but the support I have been getting the last few days from this forum (even from folks who are pursuing 'alternative' treatments) is that a long-term course of abx is actually quite crucial for kids with PANDAS-like issues.

 

Just yesterday I started my own thread on what tests to do after basic bloodwork, and I mentioned stopping abx after a month. So far, the support is towards staying on them until we've figured out what the 'culprit' is, especially since we have a 3-month Rx already. I think this might be b/c the immune system is so crazy that somehow the abx take some stress off it, leading to a happier, more functional kid while you're trying to track down the underlying issues? Anyone else is free to chime in on this one...I'm still trying to figure it out.

 

Anyhow, as long as my dd is not getting worse and the gut/yeast issues are stable or improving, I'm starting to think I should keep dd on abx for a while longer.

 

Good luck and hope things go well...

 

Malke