Can this be pandas? (Sorry yet another )

amother

DarkMagenta

Fri, Oct 22 2021, 9:49 am

Hi. Is there a reason my doc is open to treating with antibiotics but wouldn’t call it pandas. Like sort of avoiding labeling it? Also can blood work be ok but based on behavioral symptom and past history can it be pandas?

amother

Whitewash

Fri, Oct 22 2021, 9:49 am

momsrus wrote:

therefore you are confusing things unnecessarily

If the kid has strep, she should treat and move on, not dig deeper because "strep doesn't cause behavior changes"

Fever is a normal immune response to strep. Antibodies to the basal ganglia is a mistaken, misdirected and harmful response to strep and should be addressed. It may be common, and getting commoner every day, but it’s still not normal. A healthy immune system doesn’t attack itself.

momsrus

Fri, Oct 22 2021, 9:51 am

amother [ Whitewash ] wrote:

It doesn't matter what you want to call it. Her question was if her child tests positive to strep today, can she assume it's plain old strep causing the behavior part and the answer is yes.

amother

Whitewash

Fri, Oct 22 2021, 9:55 am

amother [ DarkMagenta ] wrote:

Ive had this experience too. I find that because it’s a clinical diagnosis a lot of doctors that don’t have a lot of experience are wary to label it. Also because there still exists some ridicule in the medical community, and also because insurance doesn’t always recognize it. They may not even understand that what they are treating with antibiotics and the reason the antibiotics work is proving that it’s pandas. Personally, I don’t care if they do or don’t tack the label on to it, as long as they are willing to trea.
Also, yes, it’s very possible for bloodwork to be normal and still have pandas. Strep titers are a fairly unreliable and imprecise measure of pandas, though it’s the best we have atm. Another reason you may not see elevated strep titers is because you are dealing with another infection altogether than can cause the same symptoms, such as mycoplasma, Lyme, bartonella, coxsackie, h1n1, cmv, etc. in this case it would be considered PANS.

amother

Whitewash

Fri, Oct 22 2021, 9:57 am

momsrus wrote:

It doesn't matter what you want to call it. Her question was if her child tests positive to strep today, can she assume it's plain old strep causing the behavior part and the answer is yes.

It would matter to me if my kid was having a misdirected response, but I guess everyone’s different. You are right that for right now the main thing is to treat if there is an active infection going on, and hopefully behaviors will return to baseline. But OP already said that child is generally anxious, so there is reason to believe her baseline isn’t a real baseline either.

amother

Whitewash

Fri, Oct 22 2021, 10:00 am

Also, I think it’s important for OP to know that even if there isn’t evidence of an active infection going on, her child will still benefit from treatment for strep. So that she can properly advocate for her child.

amother

Narcissus

Fri, Oct 22 2021, 10:31 am

amother [ Whitewash ] wrote:

Sewsew_mom

Fri, Oct 22 2021, 10:37 am

amother [ Whitewash ] wrote:

I love all your responses. Your are Def well versed and very helpful. Thank you! (I'm sorry your well versed 😢 but thanks)

amother

Whitewash

Fri, Oct 22 2021, 11:28 am

Such an interesting phenomenon I’m noticing here.

When Dr. Sue Swedo “discovered” pandas in the 1980’s, her entire chiddush, and what kicked off a lot of the controversy was this major paradigm shift from previously held medical beliefs, that an infection can cause behavioral and neuropsychological symptoms in children. Until then a strep swab was reserved for fevers and sore throats.

And in many places that’s still how things work. If you walk into a doctors office and ask for a strep swab because your kid is anxious, can’t sleep, stopped eating, is having meltdowns, or stuttering or can’t sit still they will look at you like you grew horns and refer you to a psychologist or psychiatrist.

It’s only thanks to Dr. Swedo’s work, and Dr. Schulman who continued some of the early research and shared her findings extensively with frum physicians that this idea has made such inroads in our communities. So here we are, considering behavioral changes due to strep so accepted, so obvious and so commonplace as to be completely normal, yet for some reason we will still insist it NOT pandas. Why??

amother

Whitewash

Fri, Oct 22 2021, 11:33 am

amother [ DarkMagenta ] wrote:

Thanks so much for your reply. Does regular bloodwork include this whole work up?

Depends what you mean by regular bloodwork. The most standard labs used to check for pandas is ASO and Anti dnase b. But it’s important to note that these aren’t tests for pandas. They test for the presence of strep antibodies, but even the antibodies are detected in an indirect way. So this test can tell you if your kid recently had or was recently exposed to strep. A very very high count may be indicative that your kids body is fighting a chronic strep infection, or is having a sustained immune response to strep for whatever reason. But it’s still not a proof that pandas is happening, and the absence of these titers isn’t a proof that pandas isn’t happening. Outside of this there are other labs that are helpful, such as titers for a bunch of other infections that can kick off the same misdirected immune response, allergies which are another trigger, and digging deeper, nutrient levels, thyroid function, inflammatory and autoimmune markers, immune system function tests and so on. But again, none of these rule pandas in or out.

amother

Whitewash

Fri, Oct 22 2021, 11:36 am

Sewsew_mom wrote:

I love all your responses. Your are Def well versed and very helpful. Thank you! (I'm sorry your well versed 😢 but thanks)

Thank you. It’s a sad club to be in but knowledge makes me feel empowered.

amother

Violet

Fri, Oct 22 2021, 11:40 am

At the same time explore other reasons. Maybe she heard/ read/ saw a scary story that is causing the anxiety. Baby talk can be part of anxiety. Just make sure to cover all your bases and find all possible causes because sometimes it's not pandas and then the poor child is left to suffer for years unnecessarily.

amother

Tue, Oct 26 2021, 6:47 pm

Update
Strep culture was negative for regular strep (a) but was positive for strep c. Is anyone knowledgeable about that? From what I understand it’s not usually treated but my dr is willing to give me a round of Antibiotics if I want it because of the behaviors..

Sewsew_mom

Tue, Oct 26 2021, 6:49 pm

amother [ OP ] wrote:

Whats strep c? I'm sure other people here are knowledgeable but I've never heard of that..

amother

Lotus

Tue, Oct 26 2021, 9:23 pm

amother [ OP ] wrote:

Which antibiotics is your doctor prescribing? Not all work for pandas.

amother

Whitewash

Tue, Oct 26 2021, 9:42 pm

amother [ OP ] wrote:

Im not familiar but if you’re on FB it’s worth it to join the pandas parents board and ask there, I’m sure someone has experience. I’m almost sure I remember reading there about treating for group b strep so it makes sense that group c can be an issue for some kids too.

amother

Tue, Oct 26 2021, 10:43 pm

amother [ Whitewash ] wrote:

Shoot I’m not on facebook.. and to answer the other question. It would be just regular amoxicillin