Musings

 

I want to wear blue wings and soar

above the screaming tantrums of today

 

I will take you with me (hold you)

as we gaze down upon the whispery earth

at tiny beings scuffling about

checking their clocks and bank accounts

 

Ah the life of a bird

Who does not love so much

that it hurts

 

 --LWK

Adult Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy when skies are grey

You'll never know dear,

how much I love you

please don't take my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Wednesday
Dec172014

Does My Dog have PANDAS?

Inspector Clouseau: [gesturing to the hotel's dog] Does your dog bite?
German hotelier: No.
[Clouseau bends down to pet the small dog; it attacks and viciously bites him.]
Inspector Clouseau: I thought you said your dog did not bite!
German hotelier: That is not my dog.
--The Pink Panther Strikes Again

"He can't turn around on the stairs," says my daughter. "He has to stay on the left side when he goes up or down. He's got OCD."

She's talking about our dog, a happy, hoppy, hyper terrier.

Does my dog have PANDAS? Hmmm. It's been mentioned in this house once or twice each month...let's go through the symptom list.

OCD. According to my daughter, our dog's got this. For sure. If he's out, he wants to come in. If he's in, he has to be out. Drives us crazy. And then there's the stair-walking.

Rage/aggression. Try to move him off "his" place on the sofa and he gets very snarly. If he steals food from the table and you come after him, he'll growl and try to run for cover. He is defiant as anything.You must speak to him in a calm voice, give him a command he can follow, soothe his stressed out self. Only then will he try to please you again. 

ADHD. "Where's my ball? Throw my ball, throw it. Here it is again. Throw it. Again....Food? Is that food? Is that a dog barking outside? Who the hell is outside? I've got to be louder--get me to the window--dog out there! Mail carrier!...Oh, there's a squirrel, let me chase it...Ball, Ball!"

Depression. Not usually. Sometimes, in times of flares, he's the only happy family member. Only when there's an inordinate amount of PANDAS crap in the house with a raging kid and ultra-anxious family members does he react. 

Urinary incontinence. See Depression. When the crap hits the fan, he pees on the floor. 

Handwriting decline. Well, he's a dog... But he does like to chew on pens or crayons occasionally.

Math decline. NOPE. This dog can tell time! Right around 3 PM, it's FEEDING time (he won't wait till 5 PM anymore.) And when he gets up in the morning, he's got to have breakfast before he even goes outside to do his stuff. He's got one good brain in that stomach of his. (And my husband says he's stupid. Go figure.)

Gut issues. He only gets the BEST food. From USA or Canada. No table scraps. No excess gluten or dairy. He still vomits occasionally. He loves to steal sandwiches left on the table. Then he gets sick. Think activated charcoal would work on him? 

Restrictive eating. This dog will not eat eggs. This dog WILL eat apple slices. This dog will eat stolen food, peanut butter, hot dogs. This dog will eat sticks and grass. This dog no longer eats Barbie dolls.

Tics and compulsive behavior. Nope. Unless continuously licking his unmentionables counts.

We considered running the Cunningham Panel on him. His titers were OK, though. He seldom gets colds or fevers--well, never really, which is in line with our son, who is immune deficient with an autoimmune reaction to all germs. We did put this dog on a round of antibiotics to rid him of any strep he could be carrying. Of course, this upset his stomach despite the Culturelle Probiotics we gave him and he vomited. Gut issues!

Next step: Cognitive Therapy. (If he only had a brain, my husband would say.)

Stay tuned for the adventures of PANDAS Dog. 

Sunday
Nov302014

Post-PANDAS Plans

I need to get a life.

No, really. I'm all about PANDAS and Lyme, Lyme and PANDAS. Get me on a good day and I can talk your ear off about it all. Well, you already know that if you're reading my blog. I have to practically stuff wool in my mouth when I'm in the vicinity of non-PANS people.

It's too much. We've been living with this for years now. Some days are great, others are as hellish as you can get. Why me? I have no freakin' idea. I do wonder what kind of dreadful things I must have done in a past life, or if re-incarnation doesn't exist, if this is a type of hell. Because when my kid doesn't want to live anymore, that's what it feels like.

What happened to the days of performing on stage, of romance, of trips overseas? Those were filled with joy, excitement, plans, adventure, happiness. And who says those days are done? (Well, we're out of money, but we're still living in our house, so being unable to travel to the UK for a long weekend is really a first-world problem when we are paying for some of the best doctors for our kids, right?)

Doesn't the definition of craziness include doing the same thing over and over again, expecting that you'll get a different result? 

So, it's time to break out of my internet habit of support groups. It's time to break free from my book addiction. It's time for me to start working again on my creative writing. Easy to say (write here) and harder to do.

Ever since going on doxycycline, I've had much less brain fog. I still fatigue but in a different way. My brain says it's ready to move on, to make some positive changes to show for these years. The wrinkles around my eyes are here to stay (hey, can't afford a plastic surgeon!) and I'll never see my 30s again. 

It's also wintery, blustery cold and I can't bicycle on ice-covered roads. Nor do I want to. It takes every ounce of strength to get out and walk a few miles with a great friend (who, by the way, puts up with all my PANS-ish chatter.) 

When my kids were babies, I'd take my PowerBook and go to Starbucks to write on the weekends. Nowadays, thanks to being tired, I spend a lot of time on my bed, messaging with friends, pinning articles onto PANSlife on FB, admin-ing some groups (and that's not that difficult.) I can do more. I need to do more. My life is not fulfilling enough. 

I need a diversion--out of PANDAS hell and into something special. Sure, if I had time and money and energy--Lyme does zap my energy--I'd take all kinds of classes and lessons. I'd travel and eat gluten in Italy and France again! But that's so not happening. My travel for the last couple of years has been through my books--adventures in faraway lands and times. 

It's time to do more for myself. Ideas? I usually feel great when I'm with friends, some of whom I haven't seen as much because of these diseases. I still want to write a book someday--and see it published--hardcover! I need to do fun exercise. I like to wander the streets of NYC.

So...looking for cheap ideas. Alternate dreams to fulfill. Because it's time to pick up and get myself going again.

Friday
Nov212014

Article

Check out my article in Natural Healthy Concepts!

Friday
Nov212014

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.

Monday
Nov172014

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