Our new friend, Ibuprofen!

[thenmama]

xx

Edited March 26, 2013 by thenmama

[thereishope]

I'm glad the Ibuprofen worked so well! I do have to put the "caution" sign up that long term use isn't usually recommended and over time it can wrech havoc on the stomach. So....try to figure out the minimum you can give her to have a good effect still. At one point, I only needed to give it once in the morning to set the pace for the whole day. Also, like I think you said, you may not need to give a full dose. You can also give milk around the time of the meds to coat the stomach so it's not so harsh on it.

 

I hope your appointment goes well!

[kimballot]

That is great news... but I also agree to proceed with caution with the ibuprofen. It is tough on the stomach and the liver.

 

Many people on the forum use Quercetin and other natural aniti-inflammatory supplements. Something like that might help you out for the longer haul. Also 5htp and / or melatoin at night help many of our kids to sleep

 

The fact that you saw a change, though, indicates that you are probably heading down the right path with PANDAS.... Congratulations on that.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[Megs_Mom]

Ibuprofen can work on pandas, but does nothing for regular OCD. You found the clue, now you just need the rest of the world to catch up

 

I agree w the cautions re motrin, but you will be hearing this about everything that you have to do in the next few months, so just be smart and keep it to the min, as best you can. Prednisone, motrin, ssris, abx, ivig, they all have a risk benefit ratio. But the terror of OCD is a huge risk too. I would suggest Adding a probiotic now would be smart.

 

Good luck to your sweet smart girl. Tell her She has already observed more than most docs and researchers. Maybe she will be a scientist someday!!

[AmberM]

We're using a high dose of circumin with great results. If you search the net, you'll find great info on it's anti-inflammatory properties. We use a brand called Longvida but Enhansa is really popular through Lee Silsby pharmacy and some people are getting it covered by insurance. Just a thought.

-Amber

[MomWithOCDSon]

Ibuprofen can work on pandas, but does nothing for regular OCD.

 

I don't know about that. Have you seen this paper?

 

OCD and Ibuprofen

 

Of course, maybe this goes more to say that, in truth, there's no such thing as "regular OCD" versus PANDAS OCD: that ALL OCD is the result of inflammation in certain brain centers as the result of some trigger mechanism, whether that's infection, heredity, stress/cortisol/hormones, or a combination of two or more of all of those.

[marylandmom]

We have seen Dr L. She is fantastic. My dd8 is not good about medications. I would say if I were paying out of pocket ( as we did. and well worth it) to see Dr L I would want her to see my dd at her worst. I would be sure to stop ibuprofren, at least, 2 weeks prior to appt.

[mom love]

We're using a high dose of circumin with great results. If you search the net, you'll find great info on it's anti-inflammatory properties. We use a brand called Longvida but Enhansa is really popular through Lee Silsby pharmacy and some people are getting it covered by insurance. Just a thought.

-Amber

 

 

Amber, what made you pick the Longvida brand? Covered by insurance? Really? Is that through a DAN doctor? Are you using it for allergies or simply for anti-inflammatory?

[momaine]

We have seen Dr L. She is fantastic. My dd8 is not good about medications. I would say if I were paying out of pocket ( as we did. and well worth it) to see Dr L I would want her to see my dd at her worst. I would be sure to stop ibuprofren, at least, 2 weeks prior to appt.

I looked online and I couldn't find where it says how quickly ibuprofen leaves the body, but my dd behaviors come back within 24 hours after taking ibuprofen when she is in an exacerbation, so I would not think you would need to suffer needlessly for two weeks before your apt.

[momaine]

Also, I meant to add that our doctor said it was safe to take an over the counter dose of Advil daily for an exteneded period of time. She said at that dose (we didn't even need a full dose) that it was considered very safe. Take it with food. (you can take an acid reducer with it too, if it causes probelms) We've had liver tests done on our dd and nothing has shown up even though she spent a year taking way more advil than I wish she had. It brought her such huge relief. If it is helping your dd, discuss it with your family doctor or with your Pandas specialist and see what they think.

[Megs_Mom]

Ibuprofen can work on pandas, but does nothing for regular OCD.

 

I don't know about that. Have you seen this paper?

 

OCD and Ibuprofen

 

Of course, maybe this goes more to say that, in truth, there's no such thing as "regular OCD" versus PANDAS OCD: that ALL OCD is the result of inflammation in certain brain centers as the result of some trigger mechanism, whether that's infection, heredity, stress/cortisol/hormones, or a combination of two or more of all of those.

 

Yes - but I think that pulling from a subset of patients with likely auto-immune issues will result in patients whose OCD is helped by ibuprofen due to auto-immune contributing factors.

 

The issue with OCD research, IMO, is that they are not pulling out the auto-immune kids. So clearly prednisone works for pandas OCD - but for "regular" OCD, it makes the anxiety go off the chart. So they find a clue, then test it on the general population, get wierd results, and say that the hypothesis was wrong. The issue is, that they are mixing up the test subjects.

 

I'm not sure that there are not other kinds of OCD - maybe all inflamation, but likely not. All medically treated, but it they would figure out the CAUSE for each of our kids, then they could suggest that right treatment for that particular kid. I know that SSRI's do work for some & are awful for others - so is there a different mechanism that is being treated?

 

Anyway, I think finding that treating inflamation reduces OCD in our kids, is the best clue you can find, to build your own confidence that you are on the right path in persuing an inflamatory/infection based issue. I guess that is what I mean by it works for PANDAS OCD and not regular OCD. Just like SSRI's work better for some others, that abx does not help.

[EAMom]

We have seen Dr L. She is fantastic. My dd8 is not good about medications. I would say if I were paying out of pocket ( as we did. and well worth it) to see Dr L I would want her to see my dd at her worst. I would be sure to stop ibuprofren, at least, 2 weeks prior to appt.

 

Don't forget to make videos of your dd (to show docs) in case behaviors improve or change.

[EAMom]

By the way, here is a recent post on giving Glucosamine with Ibuprofen. http://www.latitudes.org/forums/index.php?showtopic=11120&start=0&p=93863&hl=glucosamine&fromsearch=1entry93863

 

The glucosamine might help prevent ulcers and also might make the ibuprofen more effective.

[MomWithOCDSon]

Anyway, I think finding that treating inflamation reduces OCD in our kids, is the best clue you can find, to build your own confidence that you are on the right path in persuing an inflamatory/infection based issue. I guess that is what I mean by it works for PANDAS OCD and not regular OCD. Just like SSRI's work better for some others, that abx does not help.

 

Yes, and for some of us, both abx AND low-dose SSRI's bring positive effects, so we muddy the waters yet more still!