PANS motrin trial | Imamother

amother

Sun, Apr 07 2024, 11:16 pm

I'm the OP from the Please help with my 5 yo dd from a while ago.

We took her to the doctor a second time on friday.

The doctor said we could do a motrin trial to see if it's PANS and if there's any improvement with the motrin.
(She didn't include benedryl, just motrin.).

Now she said to do 3x a day for 5 days.

Problem is:
We can't do 3x a day.

If we do it when she wakes up after eats something (9 am), and then after school (4:30 pm), then we can't do the next dose because that's not till 10:30.

So my question is - is there any benefit to doing it 2x a day or will that not help at all?

Thanks

amother

Blushpink

Sun, Apr 07 2024, 11:18 pm

You should be asking ur doctor but I personally see improvement immediately like within 2 days of dosing every 8 hours which is basically twice a day (7am with breakfast, 3pm when they come home and also miss the 3rd dose(

amother

Sun, Apr 07 2024, 11:33 pm

thanks.

and then, once it's over, do the problems restart, or is it over?

That's what the doctor said - to pay attention, if it gets better during the motrin trial and if the tantrums and issues resume afterwards or not.

amother

Cerise

Sun, Apr 07 2024, 11:50 pm

We see immediate improvement like with a single dose. Personally if I was going to do just 2 doses a day I'd do them 12 hours apart so like 8 am 8 pm.

This isn't a permanent cure. Yes, the behaviors come back when the motrin wears off.

amother

Mon, Apr 08 2024, 12:36 am

Thank you.

The doctor says it’s not pandas because no strep.
But she said a high fever (which she did have) can cause pans.

amother

Cerise

Mon, Apr 08 2024, 4:10 am

amother OP wrote:

Thank you.

The doctor says it’s not pandas because no strep.
But she said a high fever (which she did have) can cause pans.

It's not the high fever causing pans, it's whatever infection is causing the high fever. If you want to get to the bottom of it, you'd need to figure out which virus it was and treat it. Along with the motrin for inflammation.

And how did your dr rule out strep?

amother

Papaya

Mon, Apr 08 2024, 6:57 am

amother OP wrote:

Thank you.

The doctor says it’s not pandas because no strep.
But she said a high fever (which she did have) can cause pans.

You need to do blood work to rule out pandas. It doesn't show up as a regular strep.

amother

Tue, Apr 09 2024, 9:10 pm

Cerise -
How can we figure out now which virus it was?
We thought maybe it was flu OR any flu-like illness but we didn't test for anything.
It was the last few days of february. She was in-bed type of sick for 3 days with high fever and then she got better B"H.

Papaya -
we tried to get the doctor to check blood titers for strep (and other things). But she wouldn't.

amother

Cerise

Tue, Apr 09 2024, 9:13 pm

amother OP wrote:

You would need to run titers for viruses that typically cause pans: Coxsackie, hhv, flu a and b, cmv, ebv

I agree though that it could have been strep

How's the trial going?

amother

Wed, Apr 10 2024, 11:41 pm

Thanks!

My husband wants to wait a bit and see how she's doing before starting the trial. Since it's gotten a little bit better B"H.

amother

Cerise

Thu, Apr 11 2024, 7:46 am

amother OP wrote:

Thanks!

My husband wants to wait a bit and see how she's doing before starting the trial. Since it's gotten a little bit better B"H.

Totally understand the desire to refrain from giving what seems like unnecessary medication, but from nfortunate experience, this isn't going away on its own. It's normal for it to wax and wane, and make you think it's getting better, but the longer you hold off on really treating, the harder it will be to walk it back .

amother

Papaya

Thu, Apr 11 2024, 9:46 am

amother OP wrote:

Why wouldn't she? I don't understand this, if your doctor refuses to take blood work from your DC, it's time to switch doctors.