Gettnig evaluated for PANDAS/PANS

[Anonymous]

DD's psychologist thinks we need to check to see if she has PANDAS. Will my pediatrician know what to do? How quickly can we get antibiotics? I've read different things about how much teting is involved/whether it is a diagnosis of exclusion.

[Anonymous]

If he tests positive for strep, that's the first step.

If it's negative, see a developmental pediatrician.

[Anonymous]

It is a diagnosis of elimination.

Here’s a site listing the general ones people like to do. http://www.pandasnetwork.org/understanding-pandaspans/immunological-workup/ When our psychiatrist first mentioned pandas, we didn’t get all these (she’s not a pandas expert) but she knew enough to run all the ones listed at that link under strep, and also mycoplasma. DS had sudden onset neuro symptoms, and his strep titers tested extremely high (1350 when reference range was 250). So our psych felt pretty comfortable moving forward with treatment (antibiotics) while we waited to get in with a specialist. In the absence of the high strep titers, she said she would not have felt comfortable treating, esp because his symptoms were not obvious pandas (ocd and tics) — tho I note there are a lot of people on pandas forums who claim that kids can have low strep titers and pandas.

So I would start by asking your ped to test strep and mycoplasma — because a ped is unlikely to agree to anything more as a fishing expedition. If any of those test high, you should be able to get your ped on board and maybe prescribe antibotics (start with augmentin) because there’s not that much harm. And then make an appointment with a specialist.

[Anonymous]

I agree with previous poster, get your blood work. You are lucky that your therapist was knowledgeable to tell you to test. I would check for strep titers, and also the mycoplasma. Some kids respond right away to antibiotics and steroids, others need more treatment to get the symptoms to go away.

[Anonymous]

Ok, so we’re positive for an active mycoplasma infection. What next? Any chance someone else in my house has it?

What kind of specialist should we see?

[Anonymous]

Dr. Latimer in Georgetown is the regional expert - very expensive and long waiting list. I've heard good things about Dr. Shafrir in Baltimore - he takes insurance! I'm not sure if Dr. Barbi is still at Georgetown Hospital; she is an infectious disease specialist who is very aware of PANDAS.

[Anonymous]

Thanks. We’re in western Fairfax. Anyone closer?

[Anonymous]

Anonymous wrote:Thanks. We’re in western Fairfax. Anyone closer?

no

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thanks. We’re in western Fairfax. Anyone closer?

no

There are like 4 pandas experts in the country. Latimer is one. People come from all over the US to see her. I think you can drive in from Fairfax.

[Anonymous]

I would get another opinion before going to an "expert" on PANDAs.

[Anonymous]

What treatment is being given for the mycoplasma pneumonia?

[Anonymous]

Well, my DS takes minocycline for mycoplasma but is on other antibiotics as well for various tick infections. Here are two his on at the same time as mino - omnicef and rifampin and I think they both offer some coverage for myco as well. He pulses them so not taking daily which has worked for the other infections but isn't working for mycoplasma which keeps rearing it's head. He doesn't see Latimer but it seems that all those in the area with strep/myco PANS do.

Good luck! Driving shouldn't ever be an issue with these infections. People fly in from around the world to see DS's dr and I'm sure they come from all over the US to see Latimer. You do what you have to do for your kid.

[Anonymous]

When my DD received IVIG in Latimer's office, there was someone from England also going through IVIG the same day. Also a young girl who received her first treatment at NIH and had been referred to Latimer for followup care. Tics are gone now!

[Anonymous]

Anonymous wrote:What treatment is being given for the mycoplasma pneumonia?

5 days of azithromycin. Not going to cut it.

Yes, I understand that I can drive in from Fairfax. I was just hoping for gap coverage - someone who would prescribe 6 weeks of antibiotics or something while I wait to get in to see a true specialist. Our pediatrician gave us no additional instructions or even a follow up appointment, so I'm a bit lost. I actually wonder if the pediatrician we saw went on vacation, because it was someone else from the practice who called in the 5 days of azith. I wonder if she even read the file.

Latimer's office is closed for lunch, but I will try again in a bit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:What treatment is being given for the mycoplasma pneumonia?

5 days of azithromycin. Not going to cut it.

Yes, I understand that I can drive in from Fairfax. I was just hoping for gap coverage - someone who would prescribe 6 weeks of antibiotics or something while I wait to get in to see a true specialist. Our pediatrician gave us no additional instructions or even a follow up appointment, so I'm a bit lost. I actually wonder if the pediatrician we saw went on vacation, because it was someone else from the practice who called in the 5 days of azith. I wonder if she even read the file.

Latimer's office is closed for lunch, but I will try again in a bit.

Do NOT leave a message at Dr. L's. Keep calling until you reach a person. Get your initial appointment but indicate that you are in the area and wish to be put on the cancellation list. Because so many come from so far, there are often cancellations. Do not rely on being on the list for getting in on a cancellation. Call once or twice a week to ask if there have been cancellations.