Ode to a PANDAS dad

Who woulda thought
when we fell in love all those years ago
(riding the subway together around the city
going out for bagels--sesame with cream cheese and tomato--
or the Wok-n-Roll Chinese restaurant in the Village--no longer there)
that our future would include a strange disease with a fuzzy animal name?

I wanted kids.
You weren't as committed but agreed.
We had fun together, those early years, just the two of us
traveled, had date nights
Everything fell into place--my new job, a cute old house
the German Shepherd puppy you wanted
a first child
a second child
We found a good babysitter and bicyled together. 

Jump forward.
you who doesn't really cry
will look at pictures of the kids from years past
and get almost-teary eyed
almost

life isn't the same anymore
something is missing from the days of cheery-eyed children 
you call it the "new normal"

You amaze me.

And I don't say it often enough.
I don't thank you often enough.

You, who are so creative, opening up your own business from home
only to be left tending to a sick child
driving him to and from school
staying with him when he's homebound
dragging him to doctor appointments
again again again
to the point where you don't even know which doctor you're talking to anymore

cooking for him and us
(a fusion chicken with coconut milk and turmeric--healthy turmeric)
and avoiding all dairy, egg yolks, gluten, yeast, olive oil, peanuts
making sure he has protein and allergy drops
administering the meds I leave every morning

taking him on bird-watching trips
bicycling, talking with him about cars and ancient Greece,
politics, world news, girls and SEX

waking our daughter up every morning and getting her off to school
going on class trips
soccer practice therapeutic horseback riding drum lessons playdates girl scout pick-up
pharmacy runs, soy creamer runs
making coffee with caffeine for the boy with the migraine
and decaf coffee for those of us who can't handle our caffeine
going to every football game
videoing them and making the end of year football dinner movies 
taking our kid to the emergency room when you suspected he broke his arm
(he did) 

washing the dishes by hand when the dishwasher breaks
cleaning the house before the homebound tutor comes
getting the grass to come back in the front yard where the kids bicycled last year
setting up the blow-up water slide in the backyard
mowing all around it
buying a huge ladder to do the gutters

designing BAD PANDAS t-shirts
and the flyer for our first PANDAS Family Fun Day

understanding our son's rages
holding him down if need be
rejoicing in his good days
always paying the doctor bills
even when it means borrowing more from a credit card
arranging a babysitter so you can go out and do your professional job

yeah, you're not pefect
and neither am I
you calm me down when I need a hug
and take over with the kids when I need a break

every day you GET Lyme and PANDAS even more
you can now talk about the controversies
(not that you want to)
you can take apart our son's bicycle after he tries to escape on it
and just as quickly put it together again when he's calm

You can fix a flat bicycle tire in minutes
and make us all laugh and get silly 
you can cuddle our daughter while I get our son to sleep
but you can't take away her night-time anxieties 

And you can't fix our first baby

Guys like to fix things
how frustrating, how disempowering
It's been four years of not being able to fix things
but with a simple hand on my shoulder,
your big hugs, your sense of humor, a word about love
that morning cuppa Joe for our son
that final, "Have a good day and be safe" before we leave,
you're always being there for us
you make a difference
we are a team

You, who never knew if you'd have children
who love your children beyond anything now
would do anything for them
and are so loved in return 

you are the world to our little family

PANDAS Family Fun Day (guest blogger!)

This article has been moved to the Kids Corner. 

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.

Lyme Symposium at UNH: Part 2

After a year of reading about Dr. Joseph Burrascano, I got to hear him speak...live! I swear, I felt like I had won a lottery ticket to a Lyme Conference. Here I was, in a room filled with some of the most brilliant scientists and medical practitioners. And it was free. I was in the presence of Dr. Eva Sapi, the ground-breaking scientist who discovered that Lyme creates biofilm, as well as Dr. Charles Ray Jones, Dr. Judith Leventhal, Mrs. Sandy Berenbaum, MSW and graduate students who will help to change our world. I highly recommend the University of New Haven Lyme Symposium. 

I am reporting what I heard. Any mistakes are mine and I apologize if I erroneously attribute ideas that were not stated as having been announced by these scientists. I did not stay until the end, and thus missed graduate students talking about research they are conducting with Dr. Eva Sapi. I also missed hearing Dr. Alan McDonald.

So, here it is--Dr. Burrascano's talk: 

The tests currently available for Lyme Disease are imperfect. If a person is very ill with Lyme Disease, their body can stop making antibodies to it, and tests won't show that this is the bacteria that is responsible for their decline. Better is a culture, which Advanced Labs is now doing.

[My note: these tests have not been approved yet by the U.S. FDA. On that note, though, the FDA has approved genetically modified foods, so perhaps we shouldn't use them as an indicator to determine the worth of a food or test.]

People with Lyme Disease see symptoms wax and wane, generally in a four-week pattern. The symptoms may vary over time. Bartonella, a tick-borne co-infection, involves tendons and ligaments (not just joints.) Babesia can cause air hunger and sweating.

Serologies cannot indicate whether treatment has cleared infection. People with supposedly "Post-Lyme Syndrome" have been found to still be Lyme positive. A spinal tap is only 9% effective in detecting Lyme.

False positives on the Western blot can be caused by the patient being positive for EBV and other viruses. 

A major paradox is that the sicker the patient, the fewer the antibodies.

Culturing Bb (Borrelia Burgdorferi) needs to be revived; this is the gold standard. It is 94% sensitive. [I gotta admit--when I see Bb, I think of music. OK, that joke fell flat.] With a Lyme culture, there are NO false positives. It's a direct test.

Probenecid boosts the power of amoxicillan, according to Dr. Burrascano.

Doxycycline inhibits symptoms at lower doses and doesn't kill the spirochetes; if the correct, higher dose isn't used, it is ineffective. With the right dose, the patient can see 67% improvement within 4-6 months.

Fine nerve fibers are affected with Lyme, resulting in terrible chronic pain. This damage cannot completely heal, but IVIG can help it. Lyme can result in a decreased number of nerve fibers in the skin.

High titers to EBV and HHV-6 may show, due to exposure and viruses that have, until now, remained dormant. These viruses can be activated if the immune system is down. Dr. Burrascano talked about the dilemma of treating these viruses with antivirals and concluded that the problem isn't the viruses but the weakened immune system. He said that there are exceptions, but he advises not treating the viruses because when the Lyme is treated, the immune system will strengthen.

[My son is currently on antivirals. I imagine he's one of the exceptions. I know that doctors disagree about this form of treatment. I'm OK with his doctors not agreeing on everything, since this is all so new.]

Tinidazole is a drug that has many side effects. It's very effective in breaking up cysts. Tinidazole does need to be taken for two weeks consistently, as part of pulse therapy. 

[I haven't yet heard about this drug being used for children.]

Why pulse therapy? It's better tolerated than daily therapy and there's no need for a PICC line.

From Dr. Sapi's lecture:

Lyme comes in several forms: spirochetes, round-bodies (granules and cysts,) L-forms (cell wall) and biofilms.

According to Dr. Sapi, biofilm is like a city. Its surface looks like the moon. It's "slime." Calcium alginate is a major component. Doxycycline is very effective for spirochetes, but not for round bodies. A great combination is doxycycline and tinidazole. Samento and Banderol work on the biofilms. 

With due apologies to Dr. Sapi (and to you, dear reader,) this is when my son urgently texted me. "Mommy, I never needed you so much," he wrote. Turns out the little guy had been stung by wasps on his knees but he's so used to Lyme joint pain that it didn't register at first. Of course, my husband took care of him. But I was distracted.

Ms. Akhila Poruri, one of Dr. Sapi's graduate students spoke next about biofilm. Biofilm is like dental plaque. Even forms of strep have biofilm! She showed amazing pictures that were magnified a zillion times. It's a whole new world that Dr. Sapi and her students are exploring. 

I give these doctors and scientists a great deal of credit. They have put themselves on the line for us. They have ventured into unchartered territories, at risk to themselves, taking stances against forces such as IDSA and the CDC. They will ultimately prevail. It was exciting to see all the young graduate students, in their dark suits, who will someday be our new trailblazers. 

I just hope they will find answers in time for my own child.

Lyme Symposium at UNH: Part 1

Although my destination was the University of New Haven in West Haven, CT, my GPS told me to get off in Milford. I wasn't paying attention, so I obeyed. Which resulted in me hitting every red light along the Boston Post Road. Oh, no--I was going to be late!

I should've looked up the directions to UNH instead of blindly listening to dear Edna (GPS). Similarly, I need to learn more about Lyme Disease instead of just trusting our doctors. Don't get me wrong--we are finally working with the most fantastic doctors in the world. But I know my son better than anyone else and his health is my reponsibility. I need to be able to question, to help drive the treatment plan. And to do that, I need to learn. 

I pulled into the parking lot a few minutes late, ran in, signed my name, received a bag of information and took a seat just as the presentations began. Phew!

Turns out that three of the medical professionals with whom we've consulted were there today. I knew that Dr. Charles Ray Jones was speaking. Ms. Sandy Berenbaum, LCSW, BCD and Dr. Judy Leventhal were also there. 

I didn't stay for the entire time and so I did not get to hear Dr. Alan MacDonald speak, unfortunately. Dr. Eva Sapi was speaking when I began receiving texts from my twelve-year old son who claimed to need me "more than ever." My husband was home, I was hours away, and it turns out that my boy was stung by wasps (but he didn't tell his dad...?) But I did get to listen to most of her talk and I heard one of the graduate students speak. As well as Dr. Jones and Dr. Joseph Burrascano.

So, here are the notes about Dr. Jones that I managed to jot down. Any errors are mine and I apologize if I erroneously attribute ideas that were not stated as having been announced by these scientists. In the next couple of days, I'll add a second column with the remainder of my notes.

Dr. Jones is about 84 years old. He sports longish hair, a track suit and shoes and a cane. He is a kind, brilliant man. He is also under investigation because he doesn't practice by CDC guidelines, which still don't support chronic Lyme Disease. The investigation and the fines he has been forced to pay would have knocked another doctor out of the business. Instead, Dr. Jones works six days a week in an attempt to help the children of our world. I'm a fan.

According to Dr. Jones, tick saliva is transmitted as soon as a tick attaches to a person's body. A low level of Lyme Disease is in the saliva. It is a fallacy that it takes 48 to 72 hours for Lyme to be transmitted. Dr. Jones spoke about a three year old girl who became infected in 25 minutes. He was able to save her after her own pediatricians dismissed the bull's-eye that encompassed her entire body.

According to Dr. Jones, who has treated over 10,000 patients from around the world, less than 50% of patients report ever seeing a tick. "It's not the ones you see," Dr. Jones said, "but the ones you don't see." He added that it's a "rare treat" when there's a bull's eye rash.

We never saw a rash on my son. We never saw a tick. We have no idea how and when he got Lyme Disease.

Then again, he could've gotten it from me if I was carrying it. Lyme can be transmitted to babies in utero or through breast milk, Dr. Jones says. Lyme is carried from place to place by field mice, birds that carry and drop ticks and by mosquitos. Air travelers can accidently pack ticks in suitcases and bring them to other states and countries. Yes, there IS Lyme in Georgia.  The image of a friend of mine and her daughter flashed onto the screen. Yes, they're from Georgia. My son is friends with her daughter and in fact, they will see each other again during their next IVIG session.

Dr. Jones said that he'd left NYC for the country many years ago, to raise his family and practice as a "regular pediatrican." Suddenly, children in clusters were coming to his office complaining of symptoms that sounded like juvenile arthritis. Some of the children had strep and when treated with antibiotics, improved in terms of the joint pain as well. This showed that there was something bacterial going on.

At the time, Lyme Disease was treated with a few weeks of antibiotics. Some people healed and others had relapses as soon as the antibiotics were out of their systems. A ten-year old boy who kept relapsing asked Dr. Jones if he could just remain on the antibiotics until he was totally cured and Dr. Jones concurred. Thus was born Dr. Jones' treatment of long-term antibiotics. The boy was on antibiotics for five years. Today, the boy has grown into a man who is Lyme-free. Dr. Jones said that the child has to feel that he is Lyme-free; that's the critical point.

He also added that pulsing, or giving antibiotics for a couple of weeks and then pulling back on them before adding them back in, doesn't work with children as it does with adults. It results in a lot of herxing and doesn't help, he discovered.

Dr. Jones added that Lyme can cause autoimmune diseases. PANS/PITANDS/PANDAS symptoms can include obsessive compulsive movements, a withdrawn personality, oppositional defiant behaviors, aggression, a decline in hand-writing skills and vocal tics. 

He stressed that one needs a clinical diagnosis for Lyme Disease. You can have a positive result with Igenex but if the clinical symptoms aren't there, Lyme isn't present. Bands 31 and 34 indicate an autoimmune reaction triggered by Lyme. PANS can be triggered by all co-infections (babesia, bartonella, erlichia, etc.)

Then he talked about how IVIG affects the B cells (and he lost me. I will have to read up on B cells.) He talked about the central nervous system being affected. He talked about sensitivity to sound and light, as well as voluntary and involuntary motor systems being affected.

Double vision can occur, as can convergence insufficiency (my son suffers from this.) This can be corrected through prism eyeglasses, vision therapy and antibiotics. Processing speed can decline, but can be reversed when the child is healed.

Fatigue is a hallmark of Lyme. (Note to self: fatigue is also a hallmark of parenthood.)

Dr. Jones said that some children have full-blown psychosis. They will often respond to IVIG. Psychotropic medications, as many of us know, are ineffective for PANS. 

What struck me was when Dr. Jones talked about the NIH study of IVIG for PANDAS/PANS. The doctor we see for my son uses high-dose IVIG. And we are seeing results. High dose IVIG involves 1.5 - 2.0 mg of plasma per kilogram of body weight. The NIH study did not use this level of plasma, was not successful, and then concluded that IVIG is not helping children who have PANDAS. Breathe. They did not give enough immunoglobin for it to be effective.

Some children will not test positive to Lyme Disease at all. If a culture is tested through Advanced Labs, Lyme Disease can be detected. CDC criteria excludes bands 31 and 37 but these bands prove definitive exposure to the Lyme bacterium. There are 8 relevant Lyme bands, but most commercial labs don't test these. These Lyme bands are: 18, 23, 30, 31, 34, 39, 83, 93.

HLA antigens are associated with an autoimmune reaction.

Dr. Jones ended with a story about a boy who was mistakenly diagnosed with autism. Dr. Jones tells this much more eloquently--and I have to admit that I teared up when he told us the tale. He said to this little boy, "I hope I have the key that can unlock your brain." 

Dr. Jones healed the boy, who came back and thanked him for finding the key that unlocked his brain.

May we all find the keys for our children.

Future blog/report: Dr. Burrascano and Dr. Sapi.