Talk to me about PANDAS

seeker

Wed, Nov 11 2015, 11:32 pm

Wondering if we might have it. How is it diagnosed? Is it something my regular pediatrician can handle?

What are the treatment options?

Yes I have looked around online but I just got myself more confused and have totally run out of time for looking up things online for today, and tomorrow doesn't look much better, and then it's Shabbos (yes Shabbos starts friday morning now, have you noticed?! I hate changing the clock.) and then my kid will flip out over something and I will ask myself again whether it could be PANDAS and what kind of mother I am for not having that figured out by now.

Child in question did have a bout of strep in recent months, not much sore throat and whatever there was cleared up after the antibiotics, but for a while before the noticeable sore throat I felt that her personality was changing from happy-go-lucky to difficult and cranky (not constantly but enough to make life kind of a headache), and since then I still have those concerns plus had a sudden lightbulb moment that if PANDAS is associated with OCD then maybe her "mishigassen" that I had been chalking up to toddler behavior/going through a threenager phase/or something maybe they are really a manifestation of PANDAS - she has been showing a lot of needing things certain ways and lack of flexibility, which is not all that different from age-appropriate behavior but is a bit concerning especially because I don't remember noticing this much in her first 2 1/2 years.

Please advise. I know there's a doc Shulman in Brooklyn who talks about this a lot but I hear she is hard to get to and probably expensive too, assuming she won't be in my insurance network. Also I worry that people with a "specialty" might be too quick to diagnose and too single-minded in their treatment approach.

seeker

Thu, Nov 12 2015, 12:27 am

But how do you know if the child has PANDAS or if the numbers are just leftover from the previous bout of strep? She actually had a positive throat culture after completing the antibiotics (I had reasons for retesting... she had once before a strep that took two rounds to go away) but the doctor said that because her throat was perfectly clear it was just leftover stray bacteria that can hang around even after the active infection is over, and it can take weeks or even months to totally clear but that doesn't warrant treatment because the infection isn't active. And he generally knows what he's talking about. So I wonder how PANDAS relates to all that.

Also, what are the treatments? I have heard of it being treated with long-term high doses of antibiotics but I really don't want to do that if it can be avoided. I also thought I heard of something involving immunoglobulin - is that verified? Is this something insurance would cover?

observer

Thu, Nov 12 2015, 9:57 am

Different Drs do different things. Some just do short term antibiotics. Zithromax for a couple of weeks and then again whenever there is a flare up.

If your ped doesn't treat it, you can call up other reputable Drs in your area and go to them just for the pandas.

There is so much unknown about pandas. As my dh says "pandas is not a black and white thing!"

seeker

Thu, Nov 12 2015, 10:40 am

The positive culture was overnight but the doctor said the overnight cultures are not either-or, you look at them to see how many bacteria colonies are growing and hers had very few. And because she has already been on antibiotics a few times within the past year even though both me and the doctor are the type to avoid it unless necessary, he felt it was not warranted - taking more antibiotics within a year raises the chances for all the negative effects.

ra_mom

Thu, Nov 12 2015, 12:49 pm

seeker wrote:

If you're unsure if you're ready to go to Dr. Schulman, go see Dr. Kessler at Asisa Urgent Care. He knows a lot about pandas (though he doesn't treat it) and can tell you if he thinks your child might have it and if he recommends you go to Schulman. He sent my neighbor's kid to Schulman. They had a highly usual case with a baby, mother did not think it was pandas in the least but was at her wits end, and bh baby was helped tremendously.

amother

Slateblue

Thu, Nov 12 2015, 2:03 pm

Dr. Schulman is extremely accessible. Explain the situation to her- that you suspect Pandas, that she doesn't accept your insurance, and that you would like her opinion. I tried that by emailing her at <susankschulmanmd>. I told her that if she thought it would be necessary I would come in for a private consultation.... She ended up responding within a few hours, telling me that it's not PANDAS, and that I need not come in and pay for a consultation. She's also accessible by phone by anyone (not only her patients) from 7-8 am (I think the times are accurate). Call her office and ask her the number and times, as this was a while ago... Good Luck!

ra_mom

Thu, Nov 12 2015, 5:07 pm

FYI, Dr. Schulman does not take insurance for pandas consultation and treatment, even if she accepts your particular health insurance plan.
The way to go about contacting her for pandas consultation: call her office and explain situation. They will give you Dr. Schulman's email address and ask you to email her a full history of the child. Dr. Schulman will personally write back and let you know if she thinks it's worth coming in for a consult. She will then offer a have her employee call to schedule the consult if the parent wishes to go ahead with it.

pause

Thu, Nov 12 2015, 6:17 pm

seeker wrote:

Thanks for that very encouraging info. Do you know hat her treatment protocol is, if it is pandas?

Dr. Schulman treats with antibiotics for long-term, think like 2 years...

As per my pediatrician, even high strep antibodies doesn't indicate PANDAS. PANDAS is mainly a behavioral issue and diagnosed based on behavioral symptoms.

ra_mom

Thu, Nov 12 2015, 6:31 pm

The coarse of treatment depends on the case. In general, mild to moderate pandas is first treated with a specific brand of azithromycin that the strep antibodies usually reacts well to more than others, along with probiotics, vitamin D and omega 3.
Note that if the child is still testing positive to strep, she will first knock that out with a different course of antibiotics before she starts on azithromycin.
The dosage of azithromycin is also different than dosage used for strep or other infections.
Usually antibiotics is administered for 3 months, with checking in throughout and reevaluating once done. Results start to show around the 3 week mark but it takes longer than that to see full results. Don't get scared and think your child will be on antibiotics for years. The sooner you catch and treat the pandas, the quicker the coarse of treatment.
There are other treatments if this doesn't work.
Pandas is not diagnosed with a blood test. There are a series of methods used to come to a diagnosis.

amother

Cerulean

Thu, Nov 12 2015, 8:36 pm

ra_mom wrote:

A blood test is a very important part of the differntial diagnosis. A child with normal to low titers would not be treated with this protocol despite behavioral symptoms. There may be other infections causing the behaviors such as lyme though which would neccesitate treatment. Blood work is very important.

ra_mom

Thu, Nov 12 2015, 8:41 pm

amother wrote:

A blood test is part of the diagnosis. But you can not diagnose pandas with a blood test alone. Very important distinction.

Zeeskeit

Thu, Nov 12 2015, 9:14 pm

PANDAS is associated with strep, but it is actually caused by the antibodies that fight the strep.
The proteins of a particular strain of strep bacteria are very similar to the protein in the brain. The antibodies in the body that are elevated to fight the strep can sometimes get confused by this area of the brain instead, thus causing the behavior symptoms.
This is similar to the concept of rheumatic fever, where the antibodies of a different strain of strep mistaken a particular protein in the heart for strep and begin to attack the heart.
I hope this didn't bore you too much. I always try to get a scientific explanation for things , but in plain English. Dr. Schulman is very good at that.
Also, Dr. Schulman mentioned that she will no longer be having her call hour, but you can email her instead.
Good luck to all dealing with PANDAS, and from someone who has been there there is a light at the end of the tunnel my son had pandas for over 2 years and it is now B"H gone!