Tell me why you don't believe in pandas

ora_43

Today at 9:09 am

It's not about believe vs not believe. Plenty of disorders actually exist, but also, aren't as common as some people think.

In general, I think it's good to be a little skeptical when a disorder can't be directly diagnosed, and is said to cause an extremely wide range of symptoms. It's also good to be skeptical about anything where the main symptom is basically that the person isn't fitting in to the system (doesn't pay attention at school, chutzpadik, whatever).

Again, I'm not talking 'skeptical' in the sense of not believing it exists. But skeptical in the sense of, like, if there's no way to prove you don't have it, then rule out the other options first.

So like, if someone says, "your kid is having weird tics right after strep throat, consider giving them another week of antibiotics in case it's PANDAS" - that's a very specific symptom (tics) with no other obvious explanation, and an easy and relatively risk-free treatment. So I'd strongly consider it.

But if someone says, "your kid keeps misbehaving, give them antibiotics for a year in case it's PANDAS" - that's a very vague symptom (misbehavior) which they can't possibly be objective about, and which has many other logical explanations (kid's personality, teacher's personality, kid is bored, kid is unhappy....), and it's a more risky treatment. So I'd dismiss it unless there's some other really strong reason to consider it (eg kid's behavior was great until getting strep throat a month ago, kid is also having tics, kid's doctor thinks it's worth a try).

amother

Valerian

Today at 9:11 am

Some moms are in denial that their kid has anxiety, and maybe they have anxiety because of the way they deal with them. Pandas is trendy and acceptable. It’s a problem that it’s encouraging and allowing denial and the kid isn’t getting the true help they need.
Some kids have pandas but not with the frequency mentioned on this site and IRL. It’s over diagnosed and a breeding ground for moms in denial.

amother

↑ Tiffanyblue ↓

Today at 9:15 am

amother Lightgray wrote:

But if strep caused it can't you test that there was strep. If there was no strep how can it happen?

Yes you can. I saw my son's lab results and pandas jumped out at me, and I have no medical background.

But they need to be specific tests which need to be special ordered.

amother

↑ Waterlily ↓

Today at 9:19 am

amother Aster wrote:

This thread is amusing because in about 10 years it will sound like "tell me why you don't believe in ADHD or ASD" or "tell me why cigarette smoking is healthy"

There's nothing to believe in. Pandas is real.

Of course it’s real. And it’s not as prevalent as people on here say it is, and it’s not the answer to every childhood behavior issue. That part is fake. Real pandas is a short term issue treated by an antibiotic protocol.

amother

Milk ↓

Today at 9:20 am

Monday afternoon: child comes home from school and spends the rest of the afternoon in a rage, screaming at everyone. Yells “get away from me! I don’t know what’s wrong with me!”

Monday night: child can’t fall asleep, having panic attacks and saying “I feel like I just have to die”.

Tuesday morning- Child wakes up still with no physical symptoms and goes to school.

Tuesday afternoon: I get a text from the child’s teacher saying he is being uncharacteristically aggressive in class. Child gets off the bus with 102 fever.

Wednesday morning: Child wakes up with sore throat, puss on tonsils. Positive strep test.

Rinse and repeat about 8 times and maybe you’ll start to see a pattern, like I did.

P.S. too many people cry “pandas” without enough evidence. In my child’s case the behavior is linked very clearly with strep.

amother

↑ Tiffanyblue ↓

Today at 9:22 am

amother Milk wrote:

This is not pandas. This is a reaction to strep.

amother

↑ Milk ↓

Today at 9:28 am

amother Tiffanyblue wrote:

This is not pandas. This is a reaction to strep.

It’s not so back and white. He has a clear neurological, inflammatory reaction to the strep virus, which is the basic definition of Pandas. The symptoms don’t go away with a standard round of antibiotics, he needs to stay on them for a few weeks. During the “sick season”, he will inevitably repeat the strep cycle again 1-2 weeks after going off the antibiotics.

Pandas by definition is a reaction to strep. Pandas symptoms without a related strep infection is not pandas. It’s either PANS or some other issue.

People who think their child has pandas without a recent strep infection or high strep titers in blood are usually incorrect.

amother

Slategray ↓

Today at 9:28 am

My child slowly progressed into a lonely world over time.
She was a perfectly healthy happy 3 year old and slowly over time things got worse.
It started with potty issues....
At 5 after a severe episode. I was told it'd "late onset autism".
After many evals. Her labels were like this, asd, adhd, taurettes, odd, ocd specifically, gad overall, spd, unspecified mood disorder.
She was a serious danger to herself and others. (Waking up in middle of the night to play with knives. Only happened once. I hid all the sharp objects after that night!. Choking out her sister until an inch of her life. Literally. She couldn't be left alone for a minute.) Meds didn't work. I refuse to accept that this is her lot in life.
I know I had a neice who had sydenham chorea due to strep. And I started down thst route.

She's 11 now. She's a functional kid. But never the kid she was. With all the abx and natural remedies, vitamins/numerals/oils/diet changes.... she still has adhd and tuarettes. And I see her adhd symptoms improve over time as she grows. She still takes vitamins. Still is avoiding some good. But not completely off them. And she takes meds for her tics. But they don't even work well enough.

Had I not gotten the medical help, she'd be a physiatrist case by now. Instead is a sweet STRONG (you have to be really strong in order to be comfortable enough to make friends and maintain good relationships while your actively ticing away.... ) extremely bright kid. Who struggles with staying focused and tics.

Bh I have my child back!!! I'm still hoping the taurettes will resolve as we continue trying to find a cure. But for now, hoidu lashem!!!!

amother

↑ Tiffanyblue ↓

Today at 9:32 am

amother Slategray wrote:

My child slowly progressed into a lonely world over time.
She was a perfectly healthy happy 3 year old and slowly over time things got worse.
It started with potty issues....
At 5 after a severe episode. I was told it'd "late onset autism".
Her labels were like this, adhd, taurettes, odd, ocd specifically, gad overall, spd, unspecified mood disorder. Meds didn't work.
She was a serious danger to herself and others. (Waking up in middle of the night to play with knives. Only happened once. I hid all the sharp objects after that night!. Choking out her sister until an inch of her life. Literally. She couldn't be left alone for a minute.)

She's 11 now. She's a functional kid. But never the kid she was. With all the abx and natural remedies, vitamins/numerals/oils/diet changes.... she still has adhd and tuarettes. And I see her adhd symptoms improve over time as she grows. She still takes vitamins. Still is avoiding some good. But not completely off them. And she takes meds for her tics. But they don't even work well enough.

Had I not gotten the medical help, she'd be a physiatrist case by now. Instead is a sweet STRONG (you have to be really strong in order to be comfortable enough to make friends and maintain good relationships while your actively ticing away.... ) extremely bright kid. Who struggles with staying focused and tics.

Bh I have my child back!!! I'm still hoping the taurettes will resolve as we continue trying to find a cure. But for now, hoidu lashem!!!!

Which doctors are you going to? If your dd is not all the way better, would you consider going further to a better doctor? My DC is by an excellent doctor and seeing major improvement. Natural remedies is not enough.

amother

↑ Tiffanyblue ↓

Today at 9:34 am

amother Milk wrote:

Thank you for explaining.

As for your last sentence- a child could have had strep a while ago and it caused pandas... so I don't agree with that. It can also be caused by other infections such as lyme's. There are doctors that know how to test for these things but it is not a standard test.

amother

↑ Milk ↓

Today at 9:38 am

amother Tiffanyblue wrote:

Interesting you bring up Lyme disease because both Pandas and Lyme disease have been co-opted somewhat by communities who are quick to blame any and all symptoms on one of those two things.

Pandas is a real medical issue that needs medical treatment. Lyme disease is also a real issue that needs medical treatment. Both pandas and Lyme can be misunderstood and under-diagnosed by many doctors. On the flips side, however, both diagnoses are thrown around too much by “natural” communities as the source of their kids issues, with no evidence.

amother

↑ Milk ↓

Today at 9:44 am

amother Milk wrote:

To add on, even my child’s case is a gray area, because after about 6-8 months of this strep cycle, he started having the same neurological inflammatory reaction to any illness he got, not just strep. My mainstream pediatrician told me that this can happen, that the body’s immune system gets into a state eventually where any illness triggers the pandas symptoms. I don’t know what this is called and or if it falls under pandas and I don’t really care. But the key point is that it’s triggered initially by a physical illness, usually a few days before the physical symptoms even emerge.

My son has been going through this for about 2 years and BH BH what we have seen is that once the “sick season” is over, like once it’s late spring/summer, and my child isn’t getting constantly sick, he is back to being himself until it all starts again around sukkos time.

amother

↑ Denim ↓

Today at 10:11 am

amother Aster wrote:

Besides for your cigarette comparison.
The rest are exactly the same as pandas.
Very real conditions that effect human life but unfortunately often misdiagnosed some times intentionally and sometimes accidentally.

mha3484

Today at 10:16 am

amother Amber wrote:

As a pandas mom, it’s painful to read some comments. Of course we went the psychiatric route and got anxiety and a list of other meds to try and help our child. Until you have one of these children, it’s hard to understand it.
If your child’s behavior gets worse during strep and better once he’s treated then great! It’s when things start to get worse in many areas: rages, anxiety; odd, bed wetting, handwriting, regression, food restrictions, tantrums that aren’t the norm, anger, ocd, tics…. These are just a few things one might notice . I don’t wish PANS on anyone

[b]

I promise I am not picking on this specific poster but the bolded statement is what I think makes the whole pandas thing feel cultish and off putting to many of us. I've seen this many times on this website and I don't get it. I have 5 kids none of who are neurotypical and I am not neurotypical. I am in various special needs groups and rarely ever hear someone call themself an ADHD mom or ASD mom or Anxiety Mom but with the pandas it seems to become such a part of your identity.

amother

Lemonlime

Today at 10:19 am

I have a unique hypothesis about pandas. I do believe in it, (having gone through this with one dd) BUT from anecdotal evidence I have a slightly different take in treating it.

The vast majority of people (although not everyone) who I've spoken to about their pandas kids have mentioned that DC always had a tendency towards disregulation. E.g. the kid who cries easily, tantrums a bit, can be quite stubborn, etc. But pandas manifested as extreme, irrational, uncontrollable meltdowns.

My hypothesis is that many children may react to strep with brain inflammation, but that neuro-typical kids regulate through it with no symptoms, whereas children who have underdeveloped nervous systems don't regulate through it and it impacts them strongly.

To explain a bit more clearly - a baby cannot regulate through a tummy ache - he will scream and scream. A 2yo who had too much sugar will often be out of control. An overtired 4yo will meltdown. A sick child can be excessively whiny and needy . A mature nervous system regulates through these things. Even if you don't feel good, are hungry, tired or had a spike in blood sugar you can stay calm and regulated.

So I believe it's possible that often (although maybe not all) children with regulation issues REACT to brain inflammation, and if their regulation would be addressed the pandas would be irrelevant.

With my own dd we used antibiotics and motrin and it definitely helped. BUT with every cold there was regression and I was losing it. When we started floortime therapy to improve regulation the symptoms just slowly disappeared.

amother

↑ NeonPurple ↓

Today at 10:34 am

amother Lightgray wrote:

Okay so that means there can be a test to determine if it was this. Either it is pandas or it isn't

Titers can indicate whether there was a recent strep infection or exposure to strep.
But it's a known medical fact that a large part of the population never show antibodies following strep infections.

amother

↑ Milk ↓

Today at 10:34 am

mha3484 wrote:

I agree.