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Notes from PANDAS Conference

Just a few notes from the PANDAS Conference in Norwalk, CT November 15, 2014. Any errors are mine. Videos of some of the speakers will be online in the future at NE PANDAS/PANS Association.

We extend a huge thank you to the speakers: Dr. Rosario Trifiletti, Dr. Judith Leventhal, Dr. Nancy O'Hara, Dr. Denis Bouboulis and all the volunteers in several different states who made this conference a reality. Another thank you goes out to all the guests. 

Dr. Bouboulis began his talk by mentioning Sir William Osler and his work with sydenham's chorea in the 1890s, which set the stage for the more modern research of PANDAS/PANS. He went on to explore several different case histories in which IVIG was successfully used to treat PANDAS/PANS and in some cases, Lyme Disease as well.

Dr. Trifiletti talked briefly about PANDAS striking at different ages, from infant to adult. Included in this list is the "Leroy" Syndrome (if you recall, Dr. T went to Leroy, NY and treated the girls who had come down with tic-like movements. Although the disorder made the news, his quiet treatment of the girls did not.) 

There are many different triggers, including strep, mycoplasma and coxsackie.

There is molecular mimicry with some triggers.

Immune deficiencies and autoimmunity is common.

Histamines play a significant role.

Several genes are implicated.

Dr. Nancy O'Hara stated that boys outnumber girls in getting PANDAS. There is often autoimmune disease in the family. There is not always a recent strep infection.

Strep is not always in the throat--it can present as a red anal ring or as peeling fingers/feet. Family members need to be checked for strep as well.

The CaM Kinase test by Moleculera Labs can be helpful in diagnosing PANDAS, especially if a clinical diagnosis cannot yet be made.

Treatments include: probiotics, xylitol, Saccharomyces Boulardi, Antibiotics, antimicrobial herbs as well as steroids, IVIG and plasmapheresis. Cognitive therapy is recommended. Helminth therapy can help as well. Prophylactic antibiotics may be required until adulthood.

Dr. Judith Leventhal presented on the neuropsychological effects of PANDAS/PANS/Lyme Disease. Common Diagnoses in children with Lyme Disease include: Sensory Processing Disoder, Auditory Processing Disorder, ADD/ADHD, Autism Spectrum Disorder, Obsessive Compulsive Disorder, PDD, Learning disorders, Bipolar Disorder, Oppositional Defiance Disorder and PANS/PANDAS.

Listed are some signs of encephalopathy: OCD, moods swings, math decline, handwriting decline, anxiety, sadness/depression, rage, aggression, seizures, tics, self-harming behaviors.

Children suffering from this have difficulty filtering out stimuli and can easily feel overwhelmed. They have difficulty focusing their attention. Children can feel frustrated and overwhelmed with too much information. They might have a hard time on the playground at school. 

Children can misread social cues. They might not be able to complete homework and may lose necessary items. They could have eye-tracking issues when it comes to reading, and this can affect driving when they are older.

Executive functioning issues include problem-solving difficulty, weak organizational skills, difficulty controlling impulsive behaviors and emotions.Some possible accommodations are: multiple choice assessments (for kids who have difficulty with word retrieval,) visually simplified materials, extended time, the elimination of speed exercises and bubble sheets.

Again, all videos will be posted in the future. Links to the websites will be announced at www.Facebook.com/panslife.

Letter to my "Well" Child

My Dear Child,

I'm so sorry that your brother is sick tonight. We were lucky that he was a normal, happy, loving kid yesterday. 

You didn't have to run, crying, to Daddy just because your brother told me he wanted to hit me. You didn't realize that as he was sitting there, saying mean things, tears streamed down his face. You didn't hear me say to him that he's picked up some germs and is pandassy.

Just when you think PANDAS has gone away, it sneaks back in. Those November germs are everywhere. Those little itty-bitty, invisible specks of which nightmares are made. And then there's also mold from rain-wet leaves.  You and I, my sweetie, just get sick and we sneeze or get a fever. Your brother doesn't. He gets mean instead and says nasty, crazy things, talks about cutting his dad's hand off, tells me to "Shut up." Says horrible things that he knows will make you cry.

You know that if he ever said this when not sick, he would be in BIG trouble. He would lose electronics, could be grounded from being with friends. You know that YOU are NOT allowed to talk to me --or anyone else--like that. Ever. Even if you have a fever. Because you're not sick like your brother is and you don't talk to me like that. He only says these things when he's very sick and his own antibodies are attacking his brain in weird ways that I don't totally understand.

You tell me that the worst part is that when you talk to him a day or two later, he doesn't remember anything or says that he never said these awful statements.

It's crazy, huh? You're just a little girl who loves her brother and should never have to deal with the sudden craziness that overtakes him at times.

He is not allowed to be mean to you EVER. He has been told over and over again that he can take it out on Mommy and Daddy if he must, but never on his little sister (or the dog.) But when he's sick, he doesn't listen very well. 

I'm so sorry, sweetie. No, we're not getting your brother out of the house. He belongs to us, sick or not sick. We will get him better. You saw him take the vitamins I gave him before, to help him get through this bout of germs. He wants to get better. He wants to be a good person. We love him.

But we will keep you safe, my little girl. Physically safe. I know you'll cry. I know you're sad and you don't understand. I know you're traumatized and we're doing everything we can to take care of you too, but it will never be enough. 

Love,

Mommy

Birthday Shocker and Sweet November

It's the prettiest November I remember having in a long time--hues of dark red, gold, green outside my window. Blue skies. The Connecticut PANDAS/PANS conference takes place in a few days and I'm thrilled about it--happy to have helped prepare for it, excited to see friends who will be there. We celebrated my birthday and my husband's birthday with the kids...my birthday, yep. There's a story for you. I can tell you right now that there's a happy ending.

I took a half day off work so I could see my Lyme doctor (who is in the next state--about 35/40 minutes away.) But let's back-track. I took my daughter to the gas station where we purchased our flavored decaf coffees. My daughter told the manager that it was my birthday and he (friendly guy that he is) gave us the coffees for free. What a simple yet great way to start the day! Then I met my godmother for lunch before the doctor appointment. Another birthday plus as she's one of my favorite people in all the world. 

I got to the doctor, had to wait about half an hour, then was ushered into the office only for him to take a phone call. He was very annoyed at the nurse to whom he was trying to advise over the phone. I thought, "I shouldn't be hearing this." Then, on to me. And another phone call to the same nurse. Then, back to me. I mentioned that it was my birthday (usually I don't, but hey, he was my doctor!) He said, "My condolences." I looked at him in shock. "For getting older," he explained. Well, what's the alternative, I thought.

I tried to explain to him that my Lyme symptoms got worse once a month, that there's a hormonal link, that while I have had absolutely NO anxiety attacks since treating for Bartonella, I'm having a lot of pain in my right hip. Also, I'm ALWAYS tired. I live by the Spoon Theory (I only have so many spoons...that is energy per day and when I use them up, all goes kaput.) He questioned whether I had filled a prescription for Plaquenil--well, yeah, of course! and he called Walgreens to confirm. I didn't know where any of this was going.

Then he turned to me and said those words I'll always remember, even with Lyme brain: "I don't mean to offend you, but I can't treat you anymore."

Say what? Huh? 

He went on to say that he doesn't want to treat Lyme anymore anyway and he's cutting down on his Lyme patients. Stifling back my tears, I asked, "Well, why didn't you just let me know before I took a half day off work to come here?" (And yet, in the back of my mind, I knew I would never erase the birthday walk and lunch I had with my godmother.)

"I didn't know then. But you're not getting better."

He then added, "I knew you'd take this the wrong way."

Needless to say, I didn't leave a copay.

Here's the good news. I'm a patient of the immunologist who treats my kids (he's a PANDAS expert.) In fact, he is the one who had given me the Igenex test that found Lyme; well, really, he found Lyme in the whole family. I happened to have an appointment with him the following week for the kids. I took one of the spots for myself.

He switched me from Biaxin to Doxycycline. He explained that the Doxy could also hit other co-infections like erhlichia and anaplasma. I started right away and have definitely been herxing and going up slowly. No anxiety attacks. I'm still on Bactrim. And something is working. 

This weekend, in the cold, I went for a 17 mile bicycle ride--and it was wonderful! I felt energetic! I breathed in that brisk air, enjoyed the colors, chatted with my friend and husband, could have done more. Of course, I was completely tired and headachy at night, but that's OK! I can feel a change in me and it's just the beginning.

Lyme is strange. I can feel really OK for a while, then every symptom seems to hit--queasiness and dizziness, headache and joint pain. It's so Lyme that I know it's nothing else. 

But I think the most important thing I feel right now is optimism. I realize how downcast I was feeling, especially when I could only manage a 9-mile bike ride a few weeks ago. When I only had 5 spoons for each day. And I know that doxycycline is making a difference. 

My previous Lyme doctor was knowledgeable. He went by Horowitz's protocol. When I first began seeing him, I believed that I was allergic to most antibiotics. We started with herbals. I'm sorry to say that some of my symptoms have actually gotten worse while in treatment, while some have dissipated. I do not regret treating the Lyme Disease, though. It was taking over my life anyway. But I was totally devastated after being fired by my first Lyme doctor--for about 24 hours. 

It's a darn good time to have hope again. My son is herxing from Rifampin. We have to treat the Bartonella in him and he's got to get through this herx to the other side. I think that Bart = PANDAS symptoms, at least for him. My daughter's Lyme symptoms are hitting so hard. She was supposed to be our "well" child; the Lyme is overtaking her schooling and learning as well as her day-to-day life. My house is a mess (and I'm sitting here, at almost 10:00 on Veteran's Day, writing, besides my still-sleeping son who crept into our bed last night.)

But I'm planning a small bicycle ride with my husband today. I will work on report cards and prepare for parent/teacher conferences. And fold laundry. And get papers ready for a doctor's appointment and more. Or at least do as much as I can before my energy gives out.

There will be another day. I WILL get my old (youngish) self back. And I'll be doing my 25-30 mile bike rides again. Fast.

It's a Little Too Much

So, my iPhone calendar is being wiped clean after a month or so. I look back to check on an appointment or to plan something that should be a couple of weeks later than another date and there's nothing there. It's driving me crazy because I'm already having enough trouble with keeping up schedules, thanks to Lyme on the Brain. I used to be a master at it...work all day, go to a play rehearsal for 2 hours at night, go straight to a dance class, (come home, read till midnight and get up to do the same thing the next day.)

Now I don't know if I'm coming or going. I have the appointments with all our Lyme doctors stuck in my head, though. I don't even know when my hormonal cycles are anymore. I think they're off. But rather than becoming more spaced apart, as they should as a woman begins to gracefully age (!), they're coming closer together. I'm not having any more kids. I don't need this. I figure I spend a few hundred dollars monthly in supplies as it is. 

So, why is everyone irritating me? I try to be a kind, good-hearted person, and I think that I am, most of the time. But I have very little patience for certain family members. My daughter hitting her head while cleaning her room, then crying because her back went out (which it never did before but I know how it feels because mine has, but not since she's been old enough to know, so it's not mimicry.) My husband who says he absolutely cannot cook 7 nights in a row. My kids who pick up my iPhone secretly and bypass the security code by hitting the camera feature, only to take 130 blurry, grainy, silly-faced pictures and videos of themselves. 

I texted my son to let him know I'm putting the one of him saying he farted up on Facebook and tagging him.

I'm a good person. I didn't do that. 

I'm not a good person. I'm writing about it.

Leave me alone, leave me alone, leave me alone, I want to scream from the rooftops.

I've got a gripe list. I'm sorry. It's ever so...negative. But here it is. Well, some of it. 

The colleagues who started avoiding me when my son first got sick and I transformed from a smiley, jolly soul to an anxious, distraught one. Colleagues who are good teachers and care about kids (but apparently not mine.)

The friends who wrote me off (fortunately, there were very few of those) when my son showed these strange psychiatric behaviors that seemed to imply bipolar disorder, Tourette's Syndrome and OCD. The doctors to whom I just sent letters (thanks to a friend who created them, with footnotes and sources) explaining how they completely missed my son's diagnosis of PANDAS. Believe it or not, this was my new year's resolution. It's now October. I slipped a flyer for the upcoming Connecticut PANDAS conference in with the letter. 

Oops. How to guarantee that doctor never shows his face there, right? Well, maybe they'll look up pandasnetwork.com or even Moleculera Labs. 

Then there are those doctors who actually do believe in PANDAS but certainly not chronic Lyme Disease. After all, the CDC says that chronic Lyme Disease doesn't exist. And neither does the risk of Ebola in our country, right? Of course, right. 

CDC = Criminally Defective Conglomerate.

I went for a bike ride today. 

Beautiful autumn day with leaves on the ground, blowing across the path, through the woods and I wanted to turn around at half a mile. This is me, the bicycle rider, who was cycling 14 in one hour in June. If I were to graph my rides this summer, it would be downward in terms of speed and mileage. I did 9 miles today. Somebody passed me with his hands off the bars, just swinging along and I got mad enough to pull on everything I had, swing into gear, bring my bike up to 15 mph and pass him right back. Ouch. It hurt like crazy to stay ahead and not be passed again. I could feel myself breathing, could feel my right shoulder aching, the headache beneath my helmet. When I came to an intersection, I pulled over to wait for the friend with whom I was riding. Tried to look nonchalant as the guy passed me again (but hey, I was standing still--there's a difference.)

I'm resentful that laundry never gets done, that my back always hurts and I have to get others to carry the baskets up and down 2 flights of stairs for me. 

Last night, I hosted a book club party and I was melting down before everyone came over. Me--having a party on a Friday night when I feel like crap? But it was OK. I actually enjoyed myself with some very nice (and funny) women. And I didn't have more than a sip of the wine. I slept well after.

And the last big gripe? Money. I work my butt off to do a good job, bring home what could be a decent paycheck if I lived most other places in the country and it doesn't go far enough. We can't keep up with the mortgage payments. We keep trying to pay off credit but get sucked into extending it. I don't buy all the supplements I should be taking. 

There's always a positive, there's always a positive. Shut the he-- up, Pollyanna. Lyme affects much more than the brain and body. 

So, do I leave us feeling blue? 

Here are some good things, but not quite enough to fill my bucket today. 

I just got my son's name added to a fund-raising PANDAS t-shirt. He's out tonight with friends at a football thingie. My family is planning on taking me out for a nice dinner to celebrate my birthday (and my husband's which comes shortly after) despite the fact that we'll have to pay off the credit card bill someday.... Still, it beats past birthdays. 

The PANDAS conference is coming up and I'm excited about that (but have to start putting together the program and feel utterly overwhelmed by the smallest of things lately.) And we're planning a worldwide Lyme Challenge. I hope that between the CDC showing how inept it is and us spreading awareness, we will finally be taken seriously.

I think I'm just filled with everything I keep in most of the time. And I'm in pain a lot of the time. It's not horrible pain but it's pretty consistent, despite physical therapy for a few months. 

In the meantime, I have my books. Take me away, to another place and time....