Why is PANDAS controversial/not recognized by pediatricians?

amother

Khaki

Thu, Feb 14 2019, 3:58 pm

aricelli wrote:

Can a child be born with pandas?

Many many parents have seen their children's behavioral issues that they claim they were born with improve drastically with pandas treatment. Some children also have such an early onset, possibly coinciding with the terrible twos, that parents completely miss it. Others have a slow onset, where they "always had" certain behaviors, and then gradually some of the other symptoms come on until it's full blown. And btw, only because you mentioned it upthread, atypical presentation of acute strep throat infections is very, very common in pandas children.

amother

Lilac

Thu, Feb 14 2019, 4:06 pm

amother wrote:

If hundreds of parents report that their kids developed a whole bunch of neuropsych symptoms, then they took antibiotics and the neuropsych symptoms went away, then when they went off antibiotics they neuropsych symptoms came back, and then when they went back on antibiotics the symptoms went away again, and round and round again, does it really matter if there were double blind studies done to confirm this? If you were one of those mothers, you would know. The change is unmistakeable. You don't need double blind studies to tell you this. So what if it's off-label use of the drug? You know how many drugs are used off-label?

I get what you're saying. And I have more familiarity with other forms of auto-immune diseases that people feel are helped in non-conventional ways, not backed by classic mainstream medicine. And I absolutely believe that mainstream medicine has a very long way to go when it comes to understanding and treating auto-immune issues.

But, I can also understand why it's not accepted or is controversial when those studies aren't there. There are parents who are 1,000% convinced that a vaccine gave their child autism, but they're wrong.

aricelli

Thu, Feb 14 2019, 4:08 pm

Amother khaki:
Do you mean where I mentioned stomach issues? That was a different child. He had no other symptoms bh. Improved with abx. My little guy with the bigger issues is big time spd and possibly asd and adhd: the appropriate therapies are working tremendously, so I’m not pursuing pandas. (And yes, it hurts that my ped wont acknowlege these diagnosis and therapies so I feel with you).
I’m so sorry for your child btw and hope it all works out. When our children hurt we hurt as well.

ra_mom

Thu, Feb 14 2019, 4:12 pm

amother wrote:

This is the type of talk and thinking that makes us scratch our heads.

amother

Khaki

Thu, Feb 14 2019, 4:14 pm

amother wrote:

movement disorders and ocd as post infectious sequelae of strep is actually not a new thing at all. Sydenhams chorea has been being diagnosed since the late 1800's, and was known without a shadow of a doubt to be caused by strep infections. The gold standard treatment for sydenham's chorea is and always was long term abx. Some researchers consider pandas "soft" sydenham's.

amother

Khaki

Thu, Feb 14 2019, 4:19 pm

study linking pandas and asd via Kam-Kinase neuronal antibodies

http://www.jimmunol.org/conten.....66.63

Asd parents have been saying for years that pandas was in part a cause of their children's asd symptoms. Dr. Rosario Trifiletti, pandas neurologist and researcher has lectured about the fact that children who have an onset at an age younger than 2 years their symptoms will look more like asd, and many of them actually get misdiagnosed as being on the spectrum.

aricelli

Thu, Feb 14 2019, 4:20 pm

I always used to scoff at Spd... Had a neighbor whos kid shmushed peanut butter due to supposed “sensory issues” - I felt all he needed was some good petch! Then the universe laughed at me when I raised two like this and now I say: its real all right! So even though I’m still a bit sceptical (sorry- Until one goes through something one doesnt always understand) I still am trying to understand. Please have patience with us just like I have patience with those who still scoff at spd.

ra_mom

Thu, Feb 14 2019, 4:21 pm

amother wrote:

Which part of it is making you scratch your head?

Inborn behavioral issues, the terrible twos, slow onset behaviors, gradual symptoms, all being treated with antibiotics.

Last edited by ra_mom on Thu, Feb 14 2019, 5:15 pm; edited 1 time in total

amother

Khaki

Thu, Feb 14 2019, 4:26 pm

ra_mom wrote:

Inborn behavioral issues, the terrible twos, slow onset slow onset behaviors, gradual symptoms all being treated with antibiotics.

Not sure why this is so hard to believe. Many children actually get diagnosed when their parents notice a reduction in their adhd/asd/spd behaviors and/or tics when they are being treated with abx for an unrelated infection. Or they are astute observers and notice that their children's behaviors get worse with illness, and they start digging. Is it that hard to imagine a child having an onset at 2 and parents chalking up their sudden rigidity and meltdown and food pickiness and sleep issue to the terrible twos?

amother

Khaki

Thu, Feb 14 2019, 4:28 pm

aricelli wrote:

Btw: a friends child had Sydenham chorea from strep- how does this differ from pandas if it does? (this was diagnosed by a neurologist I believe)

This is a large overlap, but different presentation. Chorea movement is different from tics, and it involves more neuro symptoms rather than psych symptoms, but some people actually consider it one and the same. This is actually the prototype Dr. Swedo used when doing her original pandas research, and it is still unclear exactly what her motive was in coining a new term for a disorder that essentially already existed.

amother

Ruby

Thu, Feb 14 2019, 4:30 pm

Quote:

Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

Penicillin does not specifically treat the symptoms of PANDAS. Penicillin and other antibiotics treat the sore throat caused by the strep by getting rid of the bacteria. In PANDAS, research suggests that it is the antibodies produced by the body in response to the strep infection that may cause PANDAS symptoms, not the bacteria itself.

Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn't enough evidence to recommend the long-term use of antibiotics.

My child has PANDAS. Should he have his tonsils removed?

Current research does not suggest that tonsillectomies for children with PANDAS are helpful. If a tonsillectomy is recommended because of frequent episodes of tonsillitis, it would be useful to discuss the pros and cons of the procedure with your child's health care provider because of the role that the tonsils play in fighting strep infections.

https://www.nimh.nih.gov/healt.....shtml

aricelli

Thu, Feb 14 2019, 4:41 pm

Its a funny world we live in! I attended a seminar that the Guttman OT sisters gave... they look at children and think “sensory and other related”, there was a social worker in attendance who said “no, these symptoms sound like trauma”. And a panda mom would tell me “pandas”
Just saying

ra_mom

Thu, Feb 14 2019, 4:49 pm

amother wrote:

There are "types" of children who may be more prone to developing PANDAS.
But if they do develop this autoimmune inflammatory response that they have actually been clinically diagnosed with, that doesn't mean that they were born with PANDAS, or that all of the issues they ever had are related to PANDAS.

There are 5 specific criteria for diagnosing PANDAS.
1) Presence of clinically significant obsessions, compulsions and/or tics
2) Unusually abrupt onset of symptoms or a relapsing-remitting course of symptom severity.
3) Pre-pubertal onset. Symptoms of the disorder first become evident between 3 years of age and puberty
4) Association with Group A Streptococcal (GAS) infection. Note: In PANDAS, GAS infections may be present without apparent pharyngitis (I.e., no complaints of a sore throat)
5) Association with other neuropsychiatric symptoms

You're dispensing inaccurate information about PANDAS and then wondering why people don't believe in it?

Last edited by ra_mom on Thu, Feb 14 2019, 4:53 pm; edited 1 time in total

amother

Mistyrose

Thu, Feb 14 2019, 4:51 pm

amother wrote:

How do you know the tics were caused by the strep infection? How do you know they were resolved by antibiotics? The fact that the tics stopped after her ds took antibiotics does not demonstrate cause and effect.

We know how antibiotics work to help the body fight bacterial infections. It's been observed and replicated in double blind studies.

My understanding, and please correct me if I'm wrong, is that the same is not true for PANDAS.

And the same can be said for therapy and psych meds. It does not demonstrate cause and effect if the tics stop after a month of therapy or psych meds. Perhaps they resolved on their own.

See how we can keep going round and round? The non-believers will not acknowledge the reality of us pandas parents.

p.s. I'm sorry that I'm posting anon. I almost always post under my sn but people here do know who I am and it wouldn't be fair to my child to share private health info.