No Respect, I Tell You!

Brain cancer gets respect.

PANDAS--nuh uh.

Our children don't have KOALAS, or BUNNIES. They don't have fluffy DUCKLINGS or PUPPIES.

OK, so let’s suppose that your child does have a disease called KITTENS, with an ssss at the end instead of a z sound. Say it loud. Say it proud.

After all, you’re not crazy, Mom and Dad. Your child’s overnight case of rages, tics, OCD, depression, etc. is medical, not behavioral and can be treated. It ain’t your fault he acts the way he does—bad parenting did not cause this. Rogue antibodies did.

So, you take a note from the doctor and send it to the school, asking for a 504 educational plan and appropriate accommodations because your child has KITTENS.

Their response: He has KITTENS? Really? What the heck is KITTENS? Oh yeah? Well, prove it. (The Cunningham panel test can now prove it, but is not yet accredited by the FDA.) But even then, the school might question it--what does KITTENS have to do with learning?

Step back a moment. Your child is friendly, personable. Even has some friends. Sure, he has facial tics but so do kids with Tourette’s. Yeah, he fails an occasional math test (or more) but so does half the school’s population. He looks normal. In fact, he’s quite a cute kid whom teachers like and consider bright.

What the school does not see is that your child expends energy all day to keep the tics hidden. What the school doesn't see is that the tics quadruple when he gets home because he’s been trying to hold them in all day.

What the school does not see are the OCD and accompanying intrusive thoughts that he tries to control when he’s in front of others. That at home, he must sit in only one seat at the dining room table or not sit at all. That doors have to be closed.  

That every time he gets chewable melatonin, he asks, “Mint?,” and if you answer, “Cauliflower,” (because he DOES have a good sense of humor and you've gotten tired of saying, "Mint" for the three thousandth time,) he goes ballistic.

That sometimes he cannot be allowed to walk around the neighborhood because he has visions of stepping out in front of a moving vehicle. That sometimes you must hide the knives in the house. That you have to sit by his bed until he falls asleep every night. Or let him sleep in your room. Every night.

What the school doesn’t see are the explosive rages.

They just see the boy-next-door who could be everybody’s friend. They don’t see how he will verbally lash out at his sister because she is healthy and he’s not.

What the school doesn’t see is that he cannot process information quickly anymore.

So, they "test" him. He’s a bright kid. Brighter than some. The problem is that school tests will only pick out the children who are at the very bottom. Depending upon the day, he might pass it all. Or they think he’s not trying. That’s it’s emotional.

What the school doesn’t see is that whenever his sister brings home a cold, a virus, the flu, the KITTENS flares up. And all the above symptoms get worse. And that when strep goes around at school...well, let's put it this way. He doesn't often get fevers. His antibodies attack his brain instead.

Names. You hear the term 'leprosy' and you shudder. That carries a stigma.

AIDS. Gay men got all the blame for that disease in the beginning. And because of that, thousands of people died.

Cancer. Cancer patients lived with shame for many years. It took a lot of public awareness and research to begin to change that.

According to the State of NJ Governor's Council on Mental Health Stigma, "Stigma and cancer have a history that many may not remember. There was a time when the public thought that cancer was contagious and always fatal. Employers wouldn't hire you if you had cancer, families wouldn't allow their children to play at houses where someone was living with cancer. Insurance didn't properly cover cancer treatment or prevention. Because of stigma and the related silence, research dollars were not prioritized for cancer. The silence also left a dearth of prevention information. Things changed when advocates fought the stigma, and we found out that there was a promise of wellness and recovery for cancer." (See here for more.)

PANDAS. Oh, that childhood disease? That doesn't really exist does it? Doesn't happen to many people, no, maybe 1% of the population. 

Names carry weight.

Suppose we re-name this cutesy syndrome. Perhaps to something that is shared by adults as well, like Autoimmune Encephalitis. Align our children with a larger community. Well now, won’t that just get a little more respectful attention! I’ve heard people suggest the Swedo Syndrome for a possible name, giving credit to Dr. Susan Swedo who first put this autoimmune disease on the map.

I recently brought my daughter in to see a new doctor. I told her that my son has PANDAS and then thought to ask, Do you believe in PANDAS? She answered yes, but stipulated that she does believe it’s over-diagnosed, that some kids just have Tourette’s. I didn’t argue with her. I would venture to say, from reading the PANDAS internet sites for a year and a half, that PANDAS is under-diagnosed.

But she believes in it. That's step one. Better than the neurologist I recently took my son to see in order to get an EEG and MRI. She told our integrative M.D. that my son's PANDAS and Lyme symptoms were psychosomatic. Would she say that if his disease was called Autoimmune Encephalitis? In other words, an invisible and brain-affecting illness? 

Yeah, he's a cool kid, lady. But he's got a lot of uncool things happening to his body inside. He knows it. He wants help. So quit doubting me already.

PANDAS gets no respect. Damn.

Truth is, not all patients with PANDAS (or KITTENS or whatever we want to call this) are children. We now know there are adults with PANDAS. It would do the PANDAS community well to align itself with a larger subset--those with autoimmune encephalitis, as was suggested recently by RadioPANDAS.

“Why don’t we rename it? I mean, no one owns it. Everyone who HAS it owns it. Big deal, we switch the name of a disease that hardly anyone knows about. What’ll be the damage?” asks my 12-year old son who has been diagnosed with this autoimmune disorder.

By the way, hysteria was once regarded as being a female disease caused by the uterus being out of place. Hippocrates believed women should be encouraged to have more sexual intercourse as treatment.   

Of course this doesn't always happen in families with KITTENS. Not when a KITTEN is sleeping in your bed.

Comments

[Evanna]

Over-diagnosed?!?! You have got to be kidding me!!! U.G.H!!!

And I'm sorry, but I had to smile at the mint/cauliflower bit. For years and years and years (YEARS, I tell ya!) we had to answer each of our daughter's million-questions-a-day using the EXACT SAME WORDS she had used ... or God help us all!!!! Whew!!! I feel your pain.

[Jennifer]

Just wanted to comment that I hear you and you are spot on!!