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Need Help Right Away--research article from PANDAS expert suggesting w


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My kid is crazed right now. He is sick and on more abx, but this morning he locked in about not wanting to read at school and went completely crazy--hitting me, kicking me, i looked in his eyes and he wasn't even there. I need to bring him to his doc, but I want to request an immune panel and co-infection testing--and I need a good, solid article by an expert suggesting this is advised. Can anyone help me quick?

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I can't think of an article right off the top of my head-- but you should tell him it is considered standard of care by top PANDAS docs-- our PANDAS doc runs them, our ped rheumy runs them, and I know Dr T and Dr B run them, as well.

 

Wish I had more-- hope someone else does.

 

If you need the set they run lmk

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Here, I'd just posted this to another thread yesterday re: which labs we've had....

 

 

 

Quantitative Immunoglobulins, A, E, G, M

IgG Subclasses 1-4

S.Pneumoniae titers- 14 serotype

Haemophilus Influenzae IgG

MycoP IgG and IgM

H. Plyori IgG, IgM, IgA

Anti-DNase B

ASO

CBC w/ Diff Platelet

Comp Metabolic Panel

GGT

Sedimentation Rate- Westergren

Urinalysis

 

C Reactive Protein and a Thyroid Panel

 

In addition, they've had Lyme testing, Vit B12, Vit D, Diptheria AntiToxoid, Tetanus Antitoxoid, EBV, and ds's immuno has ordered other labs, incl: lymphocyte enumeration panel, and Heme18

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Labs I often see run include:

 


  •  
  • Strep throat swab - rapid and/or culture
  • ASO & Anti-DNase B titers (these are strep titers), but keep in mind that not all kids elevate titers - for example, mine never has elevated titers, even with a raging strep infection.
  • Streptozyme
  • Mycoplasma Pneumoniae titers IgG and IgM
  • Tick-borne infection titers, including Lyme, Babesia, Ehrlichiosis, Bartonella...
  • Quantitative Immunoglobulins (including IgA, IgE, IgG & IgM) with subclasses on IgG
  • Pneumococcal antibodies - 14 serotypes
  • Vitamin D - many of our kids are deficient
  • Ferritin
  • Ceruloplasmin
  • CBC with differential and platelets
  • BMP is sometimes run as well as urine porphyrins

 

Research literature that might help:

 


  •  
  • From Research Subgroup to Clinical Syndrome: Modifying the PANDAS criteria to Describe PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). Swedo, SE, et al, 2012. Currently available online here: http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf
  • Neurocognitive functioning in youth with pediatric autoimmune neuropsychiatric disorders associated with streptococcus. Lewin AB, et al. (September, 2011)
  • Clinical Factors Associated with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Murphy, TK, et al (2011)
  • The Immunobiology of Tourette's Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus and Related Infections: A Way Forward. Murphy, et al (2010)
  • Maternal history of autoimmune disease in children presenting with tics and/or obsessive–compulsive disorder. Murphy, et al (2010)
  • Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. Yaddanapudi, K et al (2009)
  • Antibody-mediated neuronal cell signaling in behavior and movement disorders. Kirvan CA, et al J Neuroimmunol. 179(1-2):173-9. 2006; Epub 2006.
  • Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's Chorea. Kirvan, CA, et al (2006)
  • Therapeutic Plasma Exchange and Intravenous Immunoglobulin for Obsessive Compulsive Disorder and Tic Disorders in Childhood. Perlmutter, SJ, et al (1999) Note: This IVIG study is likely the best we have for supporting it's use until NIMH publishes the results of their current study; it's available online here: http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

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My kid is crazed right now. He is sick and on more abx, but this morning he locked in about not wanting to read at school and went completely crazy--hitting me, kicking me, i looked in his eyes and he wasn't even there. I need to bring him to his doc, but I want to request an immune panel and co-infection testing--and I need a good, solid article by an expert suggesting this is advised. Can anyone help me quick?

 

No advice. Just wanted to send a virtual hug and tell you how sorry I am that this is happening. Hang in there.

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Beth Maloney just sent out the following link in regards to a new paper posted by Dr. Jenike which you might find helpful-

 

"I received an email from Michael Jenike, MD of the OC Foundation enclosing two PSA Announcements. As you may know, Dr. Jenike has been very supportive of the principle that infections should be ruled out when children present with a behavioral disorder.

 

I am attaching the PSA that he recorded for physicians. I know that many of your pediatricians do not believe in PANDAS. I think that when they hear this directly from a Harvard doctor it may cause them to reconsider that belief.

 

Because this is from the OC Foundation, it of course discusses obsessive compulsive disorder as a primary indication. I know that so many of you do not have that presentation in your precious children who present with tics, ADHD-like behaviors, separation anxiety, etc. But what I like is that he runs through the other possible symptoms. Consistent with Dr. Jenike's statements on Anderson Cooper and to Scientific American (in regards to the Le Roy teens), he supports the concept that the sudden onset of almost any neuropsychiatric symptom warrants consideration of an infectious cause.

 

I encourage you to share this PSA with as many people and places as possible: physicians, schools, and news media outlets. Both PSA's are excellent, but the other is more focused on OCD. They can both be found at http://ocfoundation.org/PANDAS. Please visit that website to see them both."

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