Why is PANDAS controversial/not recognized by pediatricians?

amother

Khaki

Thu, Feb 14 2019, 5:17 pm

ra_mom 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?

If you're more comfortable with the wording that certain "types" of personalities are more prone to developing pandas, I totally hear that. I would still maintain that the behaviors that makes them be those "types" from birth are actually already soft signs of pandas, but it's ok if you disagree. They are that type because they already have a compromised nervous system, and often the infection is just the final straw that tips them into full blown pandas.

A few points about the criteria. 1, ocd in children can look very different than in adults and can be hard to miss.Notice that 2 says sudden onset OR relapsing-remitting course, it doesn't must be sudden onset. Like I said, many parents whose children have "always been this way" start digging when they notice symptoms coming and going. Also, the sudden onset criteria has been strongly contested by parents and clinicians. It's a clause that doesn't do the parents or children justice, but researcher like to keep criteria strict because it helps further research. Which isn't necessarily a bad thing, but it causes many children to fall through the cracks, or rather fall into the psych wastebasket. Excellent article on "sudden onset" criteria https://walkinginquicksand.com.....nity/
3 says symptoms evident after 3, notice it doesn't say onset after 3. Because before that age many of the symptoms may still look typical. Same reason kids can't get an asd or adhd diagnosis before a certain age. It's not because they don't have it. It's because clinically diagnosed disorders have to keep criteria strict. And once again, the criteria is somewhat arbitrary, tightened for research purposes but not helpful for treatment purposes at all. 3 is not a magical age when autoimmunity sets in. regarding 4, pandas has already been expanded to pans, which basically means it includes a whole bunch of other infections aside for strep. Every dr who accepts that pandas exists, accepts that pans exists.

all in all, I understand why some feel it is important to keep diagnositc criteria tight, it does lend the disorder a certain validity, but I personally am in favor of looser criteria for easier diagnosis, because otherwise these children get either no help, or get treated with psych meds and other bandaids when there are biological, medical factors that need to be addressed.

amother

Lilac

Thu, Feb 14 2019, 5:18 pm

amother wrote:

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.

amother

Khaki

Thu, Feb 14 2019, 5:20 pm

aricelli wrote:

I’m confused: if sydenham chorea seems to be acknowleged why is pandas controversial?

It's a good question and one that many pandas parents grapple with. It may have something to do with the fact that chorea is very obvious and hard to mistake, and doesn't have too many other causes, while pandas symptoms are more vague and can be chalked up to other things.

aricelli

Thu, Feb 14 2019, 5:26 pm

Aye amother khaki! My friend with a chorea child had a mighty hard time getting her child properly diagnosed... a psychiatrist who saw the child prescribed antidepressants at first... then my friend realized this wasnt depression and took her child to a neurologist... by that time her son had regressed terribly- he responded great to abx injections

amother

Seagreen

Thu, Feb 14 2019, 5:28 pm

amother wrote:

Seagreen amother I'd love to know who your dr is and who diagnosed your kid with autoimmune encephalitis, and what blood markers your child had for it.

Dr. Wendy Vargas at Columbia University. We didnt test all antibodies yet but his GAD65 were high, (among others) which means autoimmune process (can be diabetes, lupus, hashis, etc and also implicated in autoimmune encephalitis) when antibodies are high, the neurologist will figure out, based on symptoms, which autoimmune disease it is...(and order more bloodwork)
In general, she puts (and I think believes) that Pandas is autoimmune encephalitis and bills it as such for insurance. The bloodwork just confirms it for her. The point it, it isn't only strep that can trigger the autoimmune process, there are a few different triggers, and the job of doctor is to figure out what is trigger but also to treat it as autoimmune disease, etc...
Hope I make sense...not a doctor here, just a parent...

amother

Khaki

Thu, Feb 14 2019, 5:35 pm

amother wrote:

I think this gets back to the question of, How is a clinical diagnosis made?

Obviously, clinical diagnoses are made by deciding whether a person fits clinical diagnostic criteria. And this will always be a somewhat subjective call.

But here's the thing with clinical diagnoses. All it really means is that we don't have testing sensitive enough to detect what is happening biologically when we are seeing these specific symptoms.

It's the same with adhd, I don't see drs testing pateint's neurotransmitter levels before prescribing medication, nor do I see them withholding medication if the patient is short 1 of the diagnostic criteria if they and/or the parents feel medication may be helpful. You try it and see what happens. So why the major resistance to antibiotics for suspected pandas?

amother

Aquamarine

Thu, Feb 14 2019, 5:35 pm

amother wrote:

Does insurance pay for IVIG to treat autoimmune encephalitis?

amother

Khaki

Thu, Feb 14 2019, 5:38 pm

amother wrote:

makes perfect sense, we have an appt with her later this month

amother

Khaki

Thu, Feb 14 2019, 5:42 pm

aricelli wrote:

Happy your friend listened to her mom gut and wasn't satisfied with a diagnosis that didn't seem to fit.

aricelli

Thu, Feb 14 2019, 5:49 pm

So if a child starts exhibiting ocd like behaviour, anxiety and say night wetting- should the first visit be for bloodwork to rule out strep or therapist to rule out other underlying issues?

ra_mom

Thu, Feb 14 2019, 6:00 pm

aricelli wrote:

So if a child starts exhibiting ocd like behaviour, anxiety and say night wetting- should the first visit be for bloodwork to rule out strep or therapist to rule out other underlying issues?

Always speak to the child's primary care pediatrician first to rule out any physical issues. It can be a tumor or a host of other issues.
Then no matter what is causing it, and while doing whatever necessary medically, take that child to a CBT specialist ASAP so that they learn skills on how to deal with the anxiety and OCD tendencies and nip it in the bud.

aricelli

Thu, Feb 14 2019, 6:06 pm

We came full circle here: my childs ped does not believe in pandas...

ra_mom

Thu, Feb 14 2019, 6:27 pm

aricelli wrote:

We came full circle here: my childs ped does not believe in pandas...

Who said it's PANDAS? Always start with the primary care physician. Always follow your maternal instinct. Go for second opinions.
Do not neglect your child's present suffering in the meantime.

aricelli

Thu, Feb 14 2019, 6:31 pm

I’m just playing here! Doing wonderful therapy together with my child at present time! No suffering here. And btw doing therapy without ped’s support- tried to talk to him, to no avail... knew something needed to be done so went ahead and did it.

aricelli

Thu, Feb 14 2019, 6:41 pm

Btw- cbt like therapy doesnt work for my kiddo... he lies down on the floor and pretends to sleep... complete with giant noisy snores! The therapy we’re currently doing and seeing results from is dir/floortime (in case anyones interested)

amother

Magenta

Thu, Feb 14 2019, 6:44 pm

I am the OP and here's what I'm thinking...

I've been at this for many, many years. I've explored the psychologist/psychiatrist route. Tried many different medications, therapy, OT. Medications did nothing, some even made it worse. Therapy was not helpful and OT was minimally helpful. It is my duty as this child's mom to leave no stone unturned to help my child.
I think this is my next step. Who knows if it will help? I don't see how medicating for PANDAS is any more controversial than medicating for ADHD. Honestly, I felt getting a diagnosis of ADHD was a shot in the dark too. Maybe I will never get answers but I pray to HKBH that He will help lead me in figuring out how to help my child.

aricelli

Thu, Feb 14 2019, 6:49 pm

Op- good for you! Life is a journey is my motto- we gotta try anything that may help. (One thing to keep in mind which I’m sure you know just sayingfor others - is that not all therapists are the same! We had OT’s that didnt help at all and then we had a top one coming to my house and doing miracles. Same is true for play therapy- there are many modalities and we found floortime helping)
Hatzlocha!

amother

Seagreen

Thu, Feb 14 2019, 7:12 pm

aricelli wrote:

So if a child starts exhibiting ocd like behaviour, anxiety and say night wetting- should the first visit be for bloodwork to rule out strep or therapist to rule out other underlying issues?

According to Dr. Latimer, a Pandas researcher, urinary issues are the pathological symptom of Pandas. The place in brain controlling their urge to go is inflamed. My child goes to toilet literally 15 times an hour when flaring.
I would do bloodwork to rule out not only strep, but ebv, mono, flu, mycoplasma pneumonia and strep, diabetes, thyroid issues etc..
I don't know if your child writes yet, but I would also see if her handwriting changed to crazy...Many Pans kids can't write in a straight line anymore when in flare, or draw huge etc. Again, their brain controlling these things is inflamed.
So yes, I would insist on bloodwork. Last year, before Pandas diagnosis, I took my son to be tested for diabetes cuz he was going to bathroom a million times at night, he fainted at home and at school from some scary stuff, was scared to sleep alone at night...His diabetes was negative, but he had a positive strep test.

aricelli

Thu, Feb 14 2019, 7:22 pm

Seagreen - sorry for confusion: was hypothetical.

amother

Khaki

Thu, Feb 14 2019, 8:13 pm

aricelli wrote:

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

Here's why I think there's a fundamental difference between a diagnosis like spd, adhd, odd, even asd, and pandas. Pandas is the only one that makes a stab at pointing to a cause for neurological symptoms, and then attempting to treat it at the root. All the other diagnoses do is basically describe the set of symptoms you're seeing and attach the word disorder at the end, as if that explains all of it.
When it really explains nothing about WHY you're seeing those symptoms.

(the therapist saying it's trauma is really just guessing, because she has no way of knowing if it's trauma or not. And we all know that the thousands of kids will all of these issues don't all have trauma)