Advil

[MLee]

I gave my DS (9) Advil last week for 3 days for some pain he had. During this time I noticed he had a very large reduction in tics. 

Given this, what should I do? He tested negative for strep. I just want him to try a round of antibiotics but am having a hard time figuring out how to get it. All the doctors want to do more blood tests. It's frustrating. He really gets upset when having blood draws. Help!

 

[MaryAngela]

The first doctor to treat my DS (now 14) for PANDAS gave him 30 day high dose of Augmentin.  She let us start before his blood work came back.  At the time, he was completely debilitated by OCD and tics.  He had no improvement for the first 10 days, but had dramatic improvement on  day 11....and continued to improve rapidly for 3 weeks.  Ultimately, when the labs came back his strep titers were normal.  

Most PANDAS / PANS docs know that a negative strep test does not rule out PANDAS.  Also, the issue may be Mycoplasma Pneumonia (which entails a different antibiotic)...or could be strep and Mycoplasma.  

[bobh]

We had great difficulty with some blood draws.

That advil experience is a clue towards an inflammatory issue.  It's not good to give Advil over the long haul, which is why it is known as a "resuce med" - used in the short term for the worst "flares" (does your child get worse at times, or pretty steady in symptoms?).

On abx - many have struggled getting it - all I can suggest is to try other PANS/PANDAS-aware doctors.

[MLee]

Thank you. Do abx help with inflammation issues or is there another way to address?

blood draws are very stressful for ds.  We even go to the Children’s hospital and it is still difficult. 

the PANS/PANDAS doctors want to run a large quantity of blood tests and it’s impossible sometimes to get it completed. 

[4Nikki]

DD used Advil cold & sinus it reduced symptoms and stopped full rage Episodes from happening. After 18 months, it caused her immune system to start attacking her thyroid and liver. DDs pandas found her mitochondrial cells to be deficient. Once she was put on mitochondrial support her symptoms were reduced to a manageable level. Normal MRI’s don’t show anything looking for inflation. It needs to be the kind that checks for flow. Use Advil on an as needed bases. Benadryl worked for dd as well but symptoms came back stronger after 4 to 5 hours.

[GAmom]

My doctor prescribed a month-long Advil tapered burst. It helped greatly. At one point, his teachers described him as a totally different kid. We still use it occasionally if we think we see a flare, but it doesn't always help. That first time worked wonderfully. I wish I had something that would work consistently,

[bobh]

mlee, there is a rumor among MD's that some abx's might be anti-inflammatory as well as fight infection.  That helps them explain why they work so well sometimes. But I don't think that this aspect of some abx's has been well understood - I see it as speculative (not to say it isn't true).