Zithromax and tics recovery in PANDAS

[kkver]

I am trying to get most possible resources but hard to find. Spoke with Dr Carol Mathews of UCSF and she confirmed the systems and told me to see a UCLA doc James Mac* so will try to call him and see.

 

Mike :Amout of Dose should look something like this.

 

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

 

Antibiotic Prophylaxis with Azithromycin or Penicillin

for Childhood-Onset Neuropsychiatric Disorders

Lisa A. Snider, Lorraine Lougee, Marcia Slattery, Paul Grant, and Susan E. Swedo

Background: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections)

describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations

following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS

subgroup would decrease neuropsychiatric symptom exacerbations.

Methods: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis

with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom

exacerbations were compared between the study year and the baseline year prior to entry.

Results: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject,

compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p.01]. Significant

decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the

penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and

1.8 (.6 SD) in the azithromycin group [p.01].

Conclusions: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and

neuropsychiatric symptom exacerbations among children in the PANDAS subgroup.

Key Words: Streptococcal, autoimmune, obsessive-compulsive

disorder, tic disorder

The reduction of rheumatic fever (RF) recurrences by

antibiotic prophylaxis against infections with group A

beta-hemolytic streptococcus (GAS) was a key factor in

determining that GAS played an etiologic role in RF. This was

particularly true for Sydenham’s chorea, in which laboratory

evidence of an inciting GAS infection was often unobtainable

(Stollerman 1975). Antibiotic prophylaxis not only prevented

recrudescence, but also improved the long-term prognosis of RF

sufferers by preventing additional scarring of the cardiac valves

(Veasy 1995). Because of the known effectiveness of penicillin

prophylaxis for rheumatic fever (Massell et al 1988), it was

hypothesized that children with GAS-triggered episodes of obsessive-

compulsive symptoms and tics (the PANDAS [pediatric

autoimmune neuropsychiatric disorders associated with streptococcal

infections] subgroup) would have an improved outcome

while maintained on antibiotic prophylaxis against GAS infections.

The effectiveness of oral penicillin prophylaxis has been the

subject of investigation among patients with rheumatic fever. A

study investigating the pharmacokinetics of oral penicillin V

demonstrated suboptimal serum trough levels at doses currently

used in prophylaxis against GAS infections (250 mg given orally

twice a day) (Thamlikitkul et al 1992) In a previous trial of

antibiotic prophylaxis conducted at the National Institute of

Mental Health on children in the PANDAS subgroup, subjects

were randomized to receive penicillin or placebo (Garvey et al

1999). Oral penicillin administration in this trial failed to provide

adequate prophylaxis against GAS, as evidenced by the fact that

14 of the 35 GAS infections occurred during the penicillin phase.

The current guidelines established by the American Heart Association

for the prevention of rheumatic fever recommend the use

of oral penicillin at 250mg taken twice a day, however, compliance

is crucial as the short half-life of oral penicillin makes it

difficult to maintain adequate trough levels without continual

redosing (Dajani et al 1995). The prevalence and associated

morbidity of GAS infections and their sequelae has resulted in the

development of newer antibiotic regimens, which effectively

target GAS while also maximizing pharmacokinetic profiles.

Antibiotics from the macrolide class have demonstrated efficacy

against GAS infections. One of the antibiotics from this class,

azithromycin, has also been shown to provide effective prophylaxis

against GAS infections at a dose of 500mg taken once a

week (Gray et al 1998). Azithromycin has also been used in

children as prophylaxis against otitis media, with high efficacy

and low rates of adverse events (de Diego et al 2001).

We hypothesized that the prevention of GAS infections in the

PANDAS subgroup would result in an overall reduction

in neuropsychiatric symptom exacerbations and that ‘break

through’ infections with GAS, as evidenced by a positive throat

culture or a 4-fold dilution rise in anti-streptococcal antibody

titers 4-6 weeks after the infection, would be associated with

exacerbations of obsessive-compulsive and/or tic symptoms.

Our objective was to determine if the failure to reduce neuropsychiatric

symptoms among children in the PANDAS subgroup

in the previous antibiotic trial was due to a lack of association

between GAS infections and neuropsychiatric symptoms or the

result of ineffective prophylaxis against GAS infections (through

noncompliance, administration problems, or efficacy of penicillin

prophylaxis against GAS). Based on the results of the previous

study, we expected that penicillin would function as an “active

placebo” and prevent only one-third to one-half of GAS infections.

Azithromycin was expected to provide complete prophylaxis,

and therefore was postulated to be superior to penicillin in

its ability to prevent GAS-associated neuropsychiatric exacerbations.

Subjects and their parents were informed of this expecta-

From the Pediatrics and Developmental Neuropsychiatry Branch (LAS, LL,

PG, SES), National Institute of Mental Health, National Institutes of

Health, Department of Health and Human Services, Bethesda, Maryland;

Department of Psychiatry (MS), University of Wisconsin Medical School,

Madison, Wisconsin.

Address reprint requests to Lisa A. Snider, M.D., Pediatrics and Developmental

Neuropsychiatry Branch, National Institute of Mental Health, National

Institutes of Health, Building 10, Room 4N208, MSC 1255, Bethesda, MD

20892; E-mail: sniderl@intra.nimh.nih.gov.

Received September 21, 2004; revised December 13, 2004; accepted December

17, 2004.

BIOL PSYCHIATRY 2005;57:788–792 0006-3223/05/$30.00

doi:10.1016/j.biopsych.2004.12.035 © 2005 Society of Biological Psychiatry

[Rom]

if you test too soon after the zithromax, you may get a false negative

 

Ronna & Alison are best to answer this

 

yes, it is quite alarming how few doctors know of or understand about PANDAS

 

 

It is true that not many doctors (and therapists) know about PANDAS. My son started exibiting OCD symptoms almost over night. We started looking into therapists who treat OCD when one of them suggested that we take him to our pediatrician to rule out anything neurological. To make a long story short, our pediatrician mentioned a new medical theory that associated the sudden onset of OCD symtoms with a recent strep infection. He suggested swabbing his throat to check for strep. The next day we got a call from the doctor saying he was positive for strep. We were completely shocked because he had no symptoms of strep. He immediately started taking antibiotics and the OCD symptoms almost immediately started lessening.

 

I am so thankful for our pediatrician, but our son is the first patient he has ever treated with PANDAS. I feel like we need to get help from a doctor who specializes in PANDAS. Does anyone know of any doctors in the Southern California area that treats PANDAS patients? I have been in contact with doctors on the east coast, but have not been able to find any doctors on the west coast who are knowledgeable about PANDAS.

[kkver]

welcome to fourms , I live in orange county , where in So cal are you and I have not able to find any one who knows PANDAS. I have a appointment with UC irvine doc Ira Lott who i heard might have some knowledge about it but he is booked till july who in east you been talking to. My nuerologist at CHOC has little knowlege about it and she too was shocked to see zithromax work on my son . who in east coast have you been talking to I will like to talk to them too. Only person on west coast i was able to talk was Dr carlol mathews in UC San Franscisco.

Keep us posted about your son' sprogress once antibiotics finish or you plan to keep him on antibiotics. My pediatrician does't want to beilve in this and admit that i have more knowledge about this then him so I gave up on him . Nuerologist seems to admit this and trying to work with me. Have you done his blood test for ASO titers ?

[Chemar]

welcome to Latitudes/ACN Rom and thanks so much for sharing your story.

 

Even tho my own PANDAS knowledge is limited (my son tested negative) yet I know how pediatric autoimmune neurological disorders assosiated with streptococcal infections has exploded, and how many kids are being misdiagnosed with Tourette's or even classic OCD, and other neuro disorders (and being given strong brain drugs for!) when in fact they have PANDAS and most likely will need prophylactic antibody treatment (where it seems Zithromax/azithromycin works most effectively)

 

so every time we have a new parent join who has information and experience about PANDAS, we are adding to our database to help others!

 

As to finding good doctors knowledgeable in treating PANDAS, they are few and far between at present.

 

I know of some of the experts in the field who are Dr Susan Swedo in Bethesda MD who is associated with NIMH and Dr Tanya Murphy (who we saw) at the Shands Clinic in Gainesville, FLORIDA. Dr Murphy is the researcher associated with the Tourette Syndrome Association

 

here is Dr Swedo's info http://neuroscience.nih.gov/Lab.asp?Org_ID=448

and

here is Dr Murphy's http://mdc.mbi.ufl.edu/murphy.htm

 

I also have an article on post streptococcal illness, written by doctors from UCLA. Perhaps these doctors are in private practice too? and may be able to either see or at least refer you?

(The PANDAS info is about halfway down the article, but their names are on top)

http://www.aafp.org/afp/20050515/1949.html

 

hope that is helpful

Cheri

[kim]

I'm going to add a copy of a Private Message that I received from a Mom (with her permission, of course) in case any one wants to consider this Dr. The last time Dee and I spoke her son was doing wonderfully and he had had the surgery to remove tonsilsl and adnoids, however I have not heard from her in a while, and I don't know if the improvements stuck, or if her sons titers have come down or not. Just something someone else may want to explore.

 

XXXXX went on major antibiotics for his strep.

Were trying to erradicate it if possible. I've never heard of anyone succeeding

doing this but were going for it. I took your recommendation on the docs who

follow Dr Yaskos protocol. One name you gave me on the forum was Dr. Mullan

in Los Angeles. I contacted her and she has put XXXX on Yaskos strep protocol

and were flying down to see her on Tues. She really feels she can help XXXXX.

She is also friends with Dr. Yasko and has contact with her daily. Ive already

ordered the RNA supplements and her super duper strength Vit X and X and

probiotics xxx (my remark ...huge amount) billion per packet. While XXXXX on these antibiotics im giving him major probiotics before bed. Clymidicine really can rot the gut ive heard, but 3

days into it XXXXX seems to be doing really well. All of his tics and ocd have

vanished completely although that's a typical pandas trait. Hopefully it won't return when he's finished. Were still going through

with the tonsil and adnoids removal as well. This is our war against strep.

Doctor Mullen turned us onto a Xylitol nose spray, and Biotene toothpaste and mouthwash which XXXXXX is using everyday. Amie Yasko mentions this in her book

the Autism Puzzle on strep protocol. Im going for this all the way. It gets the gut back in sink so it can fight off the strep. This doctor called me immediately when she heard my message and told me exactly what to do. It felt so good for someone else to take charge for a change and tell me what to do. Took some of the weight off my shoulders. She's helped a lot of kids with tics, pandas and autism. Shes reviewing all of XXXXX medical, lab test results over the weekend. XXXXX did test positive for yeast. Not sure how bad it is thats one of my questions for Dr. Mullen.

 

Maybe Dee/Dominique will see us discussing this, and post an update. I did want to mention, from what I remember it was a different Dr. that had prescribed the Clyndimycin (I think).

[kim]

For the parent who sent the private message, I was able to find this. I am assuming that this is the Dr. that Dee took her son to. You can also send a private message to Dee. Her screen name here is Dominique. She is a lovely lady! I'm not sure why she hasn't posted. She had a very hectic schedule, at the time she was exploring this treatment for her son.

 

TACA Corona

Saturday April 21, 2007

Genetic Susceptibility to Environmental Toxins in Individuals with

Autism

Speakers: Nancy Mullan, M.D., and Michelle Dozois, parent

The increasing rate of autism strongly suggests that autism is not

caused by genetics alone. Yet environmental causes alone do not

explain the increase either. A growing number of scientists believe

that autism is caused by the interaction between genetic

predisposition and exposure to environmental toxins, including toxic

metals and infectious bacteria and viruses.

 

Dr. Mullan's presentation will focus on the role of genetics in

predisposing some individuals to autism in the presence of toxins

which have a lesser impact on others. She will simplify and explain

the impact of toxins on the body's ability to produce and

utilize 'methyl groups' consisting of one carbon and three hydrogen

atoms. Much of the biomedical treatment of autism focuses on the

manipulation of these groups, which are critical to brain function.

Dr. Mullan will explain why methyl B12 is so important and how heavy

metals do the damage they do. She will discuss the work of Dr. Amy

Yasko, who has been credited with being able to treat those

individuals who have been most resistant to therapeutic intervention.

 

Nancy Mullan, M.D., received her medical degree from Tufts

University and completed a residency in psychiatry and child

psychiatry at the University of Chicago. She was an Associate

Attending Physician and a Clinical Instructor in Psychosomatic

Medicine at Michael Reese Hospital and Medical Center.

 

After coming to Los Angeles, Dr. Mullan joined the medical staffs at

Cedars-Sinai Medical Center and Providence-Saint Joseph Medial

Center in Burbank. She taught in the medical schools at both UCLA

and USC. In 1989 she began to practice Nutritional Medicine.

Currently, Dr. Mullan practices nutritional medicine and psychiatry

in Burbank, California, treating children on the Autism Spectrum and

adults with physiologically based emotional disorders, heavy metal

toxicity, chronic fatigue syndrome and fibromyalgia.

 

Michelle Dozois is a fitness expert and the mother of two children

Luc (6 yrs) and Sophia (3 yrs). Luc was diagnosed with infantile

autism at age two. Michelle tried several biomedical and behavioral

therapies over the past 4 years to help her son develop and learn.

She reports that he has made an enormous amount of progress during

this time and appears more and more typical. She and her husband

attribute his steady growth in all areas to the GFCF diet and Dr.

Amy Yasko's protocol (www.autismanswer.com). Understanding Luc's

genetic profile and how it relates to his day-to-day functioning has

enabled the fine tuning of his supplementation to make it specific

for his particular needs and issues. Michelle will give a parent's

prospective on the work of Dr. Yasko, and will provide a brief

overview on how the protocol can complement other treatment programs.

 

When: Saturday April 21, 2007

Time: 1:30-4:30 PM

Where: Peppermint Ridge 825 Magnolia Avenue Corona, CA 92883