Conference Notes: Part 3 of 3! Final Installment

And here it is: Part 3 of 3 parts of my conference notes. Dr. Jones got two standing ovations, when he began and when he ended. I was disappointed that some of the doctors and scientists did not stay to hear him and Dr. Hubbuch speak about Lyme Disease. We need to all stick together. We're in this together and by excluding Lyme from PANS, it will take us a lot longer to get recognition and aid for both of these causes. 

My friends and I have a theory: many of these doctors who treat our children, Dr. Jones, Dr. Trifiletti...and I won't list others for fear of reprisals against them...are not only brilliant but are following some higher calling. There's something very special about doctors who will risk all to save a relatively "small" group of children when no one else will recognize or treat their disease. Dr. Jones did march with his friend, Dr. Martin Luther King, Jr.

I hope these doctors are long-remembered. I hope they become living legends. While no doctor is perfect, we hold all the doctors who have helped us in the highest regard. And for those doctors who told us we were not giving my son consequences, or our family was "too close?" Shame. 

So, here is the final installment. 

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Dr. Jolan Walter, MGH

Why IVIG works:

Decreases inflammation

Disrupts BCR (B cell receptor) aggregation in lipid rafts

Increases BCR internalization (turnover)

Over-active B-cells will not activate

IVIG replacement is .5 mg/kg/dose

Anti-inflammatory IVIG is 1.5-2.0 mg/kg, divided between 2 days

Over 50% of IVIG products are used off label in the USA

Rituxmab is a new drug

Dr. Jamie Micco, MGH Child Cognitive Behavioral Therapy Program

PANDAS/PANS symptoms: intrusive thoughts, perseveration, sticky brain

Physical discomfort is associated with these feelings and there are behavioral responses. Avoidance is rampant.

CY-BOCS is the gold standard (The Children's Yale-Brown Obsessive Compulsive Scale (CY-BOCS) is the instrument of choice for assessing symptom severity in older children (i.e., 8-18 years) diagnosed with obsessive-compulsive disorder (OCD).-- http://www.ncbi.nlm.nih.gov/pubmed/21340599

Tell your child they are getting spam/junk mail (it’s a way to conceptualize intrusive thoughts.)

Cognitive Behavior Therapy (CBT)/ Exposure Response Therapy (ERT) will help your child develop a fear and avoidance hierarchy. Child will begin with something in the mild/moderate range and work their way up. Each situation will get a fear rating. With success at earlier steps, it’s easier to get to later steps.

For children with the urge to confess, use delays.

Storch, et al (2006) studied 7 children who had PANDAS and were on SSRIs. 68% had a reduction in OCD symptoms after ERT. At the 3 month follow-up, there was a 46% reduction.

(My note: 7 children do not appear to me to be enough of a random sample size. I also question the fact that these children were on SSRIs, which do not work for many of our children. But I do believe that ERT can help.)

important: do not embark upon CBT at the height of symptom exacerbation as children may be too disregulated to learn skills and engage in exposures.

Panel:

It was stated that questions will later be posted on the Northeast PANS/PANDAS parents and/or PANDAS Network websites.

Hallucinations (Swedo)—EEGs have shown  changes in brain. Use antipsychotics, SSRIs to treat

“Cows milk is for calves” (Boch)

Is there strep in yogurt and milk? This was discussed. It’s a different form of strep completely than the GAS, yet many of our children should probably avoid dairy products to protect the gut.

EMF—(Boch)—may be affecting the BBB.  New data suggests this and Boch will be examining this in the near future.

Some of the kids with PANS are sensitive to anesthesia. Prolonged QT syndrome can result in a sudden cardiac death. Might need EKG. (http://www.nhlbi.nih.gov/health/health-topics/topics/qt/)

Don’t use Zyth and Biaxin together. Do EKG before putting child on azythromycin.  Azythromycin works right in the sinuses to help the child. However, there are azythromycin-resistant children (many in Pennyslvania.)

IVIG—every 6 months (Walter)

CVID and PANDAS: if replacement therapy is needed for immune deficiencies, do every month and add high-dose every 6 months.

No maintenance treatment with high-dose IVIG.

Then, the panel’s discussion, along with questions from audience, led to a change of suggesting IVIG every 3-6 months, depending upon how much the child declines.

Walter was not in favor of six-week treatments as it’s very expensive. The only data published is on single treatment with IVIG.

Inpatient programs for comprehensive treatment: Rogers Memorial in Wisconsin. There are some on the east coast. Email or call Dr. Swedo for recommendations.

Boch: there are more flares during allergy season.

Even on antibiotics, children are getting exposed to germs and can flare.

Flares usually last 5-7 days. Ride it out.  (This was an interesting comment because last year and before that, my son continuously flared—it was one LOOOOOOOONG flare. The moment he was better, we sent him back to school and then he flared AGAIN.)

See a doctor like Dr. Boch or Dr. Boch himself for natural immune modulators.

Peggy Chapman, R.N., C.S.:

How to explain the body to the kids:

IgM: attack marines

IgE: Airforce; they dive bomb with swelling, itching, allergies

IgA: Army

IgG: Navy; might become Th-17; they get to the war slowly, floating everywhere there is fluid, including your brain

When PANS occurs, the Navy has received the wrong intelligence and keep shelling the basal ganglia.

When the craziness hits your child, ask, “Who’s calling?”

Fear is not just anxiety. When in a flare, the child is not able to distinguish between fear and knowledge that it’s anxiety/fear.

Tamara Chansky and Anxiety Attack:  time intensity of anxiety. The attack is usually 20-30 minutes long. Differentiate the anxiety. “Your heart is pounding, because you are upset, not because you have to do something quickly.”

In the heat of the meltdown, reasoning does not work.

Anxiety lead to stomach aches, nausea, vomiting, trembling, shaking, sweating, tightness in chest, heart, neck.

Panic attacks are usually time-limited

Interview parents first alone. Kids are embarrassed and shamed to talk about these symptoms in front of people (i.e. some can’t tie their shoes anymore.)

Peggy told a story of a child who named his PANDAS symptoms “Mike.”

Show empathy toward child, “This feels really bad right now.” “Let’s work on this together.”

“How hard is this task?”  Develop a task scale.

OCD can involve sexual or forbidden thoughts.

CY-BOCS can help determine how disruptive these thoughts are.

Comorbidty of OCD and ADHD is very high.

A stimulant with too much dopamine can induce a tic.

Dopamines are big transmitters in this illness.

80% of seratonin is made in the gut!!!

Inflammation causes “rust.”  Antioxidants clean up the “rust.” (from Dr. Boch’s book; Pegggy Chapman quoted him. He was in the audience and smiled.)

Prozac, Zoloft, Luvox can be used for anxiety and OCD.

Benzodiazapines can increase GABA reliance

2-4 hours Xanax, Halcion, Serax, Versed

4-6 hours Lorazepam (Ativan)

Benedryl—get it in while in a meltdown

NAC amino acid

(Note: I was VERY impressed with Peggy Chapman.)

Dr. Hubbuch (Lyme)

Ticks are “nature’s dirty needles.” They carry multiple infections.

Lyme is transmitted en utero and through breast milk.

Birds can drop ticks into new areas (geographically.)

“The myth that there’s no Lyme Disease in Canada? Well, the ticks do cross the border.”

Studies have shown Lyme can be transmitted as quickly as 4 hours. “There is NO safe time for tick attachment.”

Prevention is much easier than treatment.

Permethrin can be used on clothing.

Put clothing at high heat in dryer for one whole hour to kill ticks. That’s how difficult it is to kill them.

The ELISA test is wrong 50% of the time (has false negatives.)

The Western blot is more specific. Most commercial tests are missing important bands that can determine if the patient has Lyme. When the Lyme vaccine was on the market, these bands turned positive for patients who had been vaccinated.

Band 41 is not specific. Bacteria can cause this band to show.

18, 23, 31, 39, 83-93 are all Lyme-specific bands

Even one specific band can indicate exposure to Lyme Disease

PCR—based on DNA materials. Unfortunately, Lyme is in the tissue, not the blood. Advanced Labs—in 16 weeks, show 94% accuracy (they say.) We need more testing on this.

If just bitten by a tick, you need at least 4 weeks of antibiotic like doxycycline.

Bartonella can cause RAGES.

Dr. Charles Ray Jones

Infection-induced autoimmune encephalopathy

90% of our genetic make up is made of organisms. If an immunization contains a component of an organism in our genome, we make antibodies against ourselves.

BTW, Dr. Jones told me that if a child is immune deficient, he should not receive vaccines.

Triggers for anti-neuronal antibodies include: strep, Lyme and coninfections, mycoplasma pneumoniae, bartonella (which can be tested through Igenex or Specialy Lab owned by Quest.)

Treat all lyme, all infections at once, including candida, or nothing will be treated.

IVIG replaces IgG in patients with immune deficiencies.

Children require 10-20 IVIGs before they are stabilized and cured. We must continue to treat for the infectious agents.

Low-dose IVIG is like shooting yourself in the foot. It stimulates cells to make more antineural antibodies.

Dr. Jones ended with this video: