April 2009 Article on PANDAS

[cwmom]

just to be clear -- I don't think the antibiotics had anythig to do with his clinical improvement -- I think it was time and resolution of the brain inflammation.

What I think the antibiotics do is PREVENT further strep starting the whole process again. he is on 250mg bid ( he weighs about 68lbs) We did miss a dose this winter he went to a sleepover

and he started having facial tics his titers did go up weeks later as well ( although not dramatically) the tics disappeared and never returned and we never miss a dose now.

I hear you about struggling--- I am a fan of never upsetting the apple cart when you find something that works

[colleenrn]

If the history and laboratory studies are negative, then no association can be identified and the patient does not have PANDAS. If they are positive, the patient should be followed over time.

 

This is the problem I had with Dr. Fuhlbrigge's article. My children have had negative throat cultures during a flareup of PANDAS and when given antibiotics, they respond and their symptoms decrease. If the strep is elsewhere (sinuses, gut, skin) then the throat culture would be negative. I think statements like this increase the likelihood that some children will have untreated strep because physicians will be unwilling to treat based on the neg culture.

Colleen

[EAMom]

I totally agree with you Colleenrn.

 

Also, some pandas kids get exacerbations from non-strep illnesses...such as when my dd got fifth's dz.

 

Also, he states regarding pandas, that "The hypothesis is coherent, but supporting evidence is weak." ...a pretty subjective viewpoint IMO...but he states it as if it is a fact. IMO the evidence for PANDAS is quite strong. (If it is indeed "weak", I would say that is the fault of the medical community, not b/c pandas doesn't actually exist.)

[cwmom]

Do you monitor their titers over time? I guess this would be the only way to try to track.and trend over time. If the PANDAS was due to strep then you should see a rise in titers several weeks later ( no matter where the source of the strep was) Dr Fuhlbrige is an advocate of monitoring titers over time ( at the same lab for consistency) and prophylactic antibiotics for those that meet criteria -- he likened this disease to Rheumatic fever and spoke at length of not even missing one dose of the antibiotic because as with RF you are left susceptible.

 

I think if anything he is giving credibility to this disease because he comes at it from an unbiased perspective -- I think Rheumatology is the one group in medicine that gets it.

unfortunately the research has not caught up with what we as parents already know. I can't figure out why I have not found more from Dr. K in the literature since he seems to see a lot of patients.

[EAMom]

We don't bother with titers...ours were low despite positive cultures and full-blown psychotic PANDAS.

 

Some kids just don't make ASO/anti-dnase B .

 

This is an extremely well-researched post on titers. Read both Aug 24 and Jan 11 posts by Buster: http://www.latitudes.org/forums/index.php?...art=#entry29305

[colleenrn]

The problem with relying on titers is that sometimes the titers are normal even in the midst of a PANDAS flareup and they still respond to antibiotics. This has happened with two of my children. Had my physician based prescribing antibiotics on these titers, who knows what would have happened with my children. Instead, we treated with antibiotics based on their PANDAS symptoms and they improved.

 

We are taught in health care that you must have abnormal titers with strep and that is just not so in every case. We are told that the throat culture must be positive to have strep and that is not so. I am frustrated after so many years of trying to explain to multiple physicians how PANDAS works in my children. Strep is not cut and dry as it is taught.

Colleen

[dcmom]

Just to back up the unreliability of titers:

 

My dd's psychiatrist (knowledgeable on pandas) told me not to bother with them, as they are unreliable.

 

DD did have positive culture (we were lucky, in that sense) in the absence of typical symptoms for strep. When we did take titers, weeks later, they were comfortably in the "normal" range. She was still in the midst of pretty high anxiety, ocd. Her neurologist seemed to think the "trending" of the titers were more important than the actual numbers. To me, it seems that would require my anxious 5 yr old to be stuck with a needle every three weeks- to prove what we already know. He also felt that strep (with the absence of pharyngitis) could be easily missed with a culture.

 

There actually is a lot that they do not really know about strep. Many pediatricians seem to want to simplify it- it is not that easy.

[Darla]

hi cwmom

 

i live in the boston area and considered taking my son to Dr. Torres... i was wondering what he reccomends as far as treatment for pandas if he doesn't agree with prohibitic antibiotics?? Also when you saw Dr. Fuhlbrigge, did he run any tests to see if your son had any autoimmune dieseases or did he go by symptoms? We have been through a string of doctors and im just trying to get it right and not waste any more time dragging my poor son around (which i worry will give him a complex) for nothing. we have seen a neurologist, a developmental pedi, and a speech patholgist. he is doing neurofeedback now which is covered by my insurance so i'll keep doing with the hopes of any little positve change coming out of it. i give him suppliments like magnesium, inositol and vitamin D. this is in addition to his daily multi. he seems to fit the pandas area, although his personality has a lot to be desired even when his symptoms wane- he just angers easily and doesn't comply at all. all his testing comes back fine- no add, no learing disabilities, just behavior issues and tics, with ocd that wax and wane. the behavior is always there (lucky me). i've been all over the place trying to figure this out- it's such a puzzle!

 

thanks for any help.

darla

 

 

_________________________________________________________________________________________________________

I thought the article was not dismissive of PANDAS but rather supportive of the need for further research.

A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well as the scientific body of work.

 

My son had the most severe OCD imaginable along with signifigant weight loss ( due to contamination fears) Our psychiatrist was an extremely important team member not only for out son but he helped us deal with those issues.

He was placed on celexa ( took him weeks o even take it due to contamination fears) his symptoms disappeared ( whether due to time, or antibiotics, or tonsillectomy we did not care we just did not want to upset the apple cart in any way, so with the guidance of the psychiatrist we weaned the celexa over a couple of months. He no longer has any psychiatry involvement and we see Dr Fuhlbrigge in june--

My preference will be to keep him on the abx for at least another year ( until he is closer to 13)

 

FYI Dr Torres (Neurologist at Boston Children's does not believe in prophylactic antibiotics)

 

I guess my send home message is you know your child best you will meet may providers with differing opinions ( even within the same institution) I would be open to anyone who wants to help you move forward and deal with all of the horrible aspects of this illness and use everyones expertise to your child's benefit.

[/quote

[sheeboo]

I emailed the good doctor to ask:

 

"I just finished reading your article on PANDAS in the April newsletter and I am curious about the research regarding your argument that, "The only role for antibiotics is to prevent recurrent strep infections and reduce the risk of future injury to the affected regions of the brain. Its important to recognize that antibiotics wont treat neuropsychiatric symptoms." Do you have any studies you could direct me to?"

 

He emailed back just 5 hours later! Here is his reply:

 

Thank you for your comment and I hope your daughter is continuing to do well.

I think there are many questions and few answers regarding PANDAS and need for a great deal more study. I do not do research in this area myself, but I do try to read the literature and help families find appropriate care for their children.

 

My comment is based on the hypothesis that PANDAS results from cross-reactivity of the immune response to strep with elements of the brain that regulate OCD and movement disorders. Treatment with antibiotics would be expected to remove the trigger (recurrent strep infections), but these drugs are not know to act directly on the brain to change behavior or alter neural signals related to movement disorders.

 

Although there is great interest in PANDAS as a potentially preventable source of OCD and tics, it would appear that this mechanism is the source of symptoms for only a small percentage of patients who present with OCD and tics every year. The majority of patients will need ongoing support from their pediatricians and psychiatrists/ psychologists and potentially need other medications. There is great risk in withholding appropriate care in hope that antibiotics alone will solve the problem.

 

I am, of course, unable to answer to your question of whether your daughter's improvement was related directly, indirectly or not at all to the antibiotics she received. I am glad she is better and hope she continues to do well. There have not been studies addressing your question directly, but neither are there studies supporting the hypothesis that antibiotics treat OCD/tics directly.

 

There are a couple of recent reviews trying to address these questions (listed below) but I think the answers are still to come.

 

With Warm Regards,

RCF

 

Robert Fuhlbrigge MD PhD

Pediatric Rheumatology

 

 

Pediatric autoimmune neuropsychiatric disorders associated with streptococci (PANDAS): update.<http://www.ncbi.nlm.nih.gov/pubmed/19242249?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

 

Shulman ST.

 

Curr Opin Pediatr. 2009 Feb;21(1):127-30. Review.

 

PMID: 19242249 [PubMed - indexed for MEDLINE]

 

 

 

Pediatric movement disorders: an update.<http://www.ncbi.nlm.nih.gov/pubmed/18607212?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

 

Wolf DS, Singer HS.

 

Curr Opin Neurol. 2008 Aug;21(4):491-6. Review.

 

 

 

Relationship of movements and behaviors to Group A Streptococcus infections in elementary school children.<http://www.ncbi.nlm.nih.gov/pubmed/17126304?ordinalpos=19&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

 

Murphy TK, Snider LA, Mutch PJ, Harden E, Zaytoun A, Edge PJ, Storch EA, Yang MC, Mann G, Goodman WK, Swedo SE.

 

Biol Psychiatry. 2007 Feb 1;61(3):279-84. Epub 2006 Nov 27.

 

 

 

Immunology of obsessive-compulsive disorder.<http://www.ncbi.nlm.nih.gov/pubmed/16650717?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

 

Murphy TK, Sajid MW, Goodman WK.

 

Psychiatr Clin North Am. 2006 Jun;29(2):445-69. Review.

 

PMID: 16650717 [PubMed - indexed for MEDLINE]

 

 

 

PANDAS: current status and directions for research.<http://www.ncbi.nlm.nih.gov/pubmed/15241433?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

 

Snider LA, Swedo SE.

 

Mol Psychiatry. 2004 Oct;9(10):900-7. Review.

 

PMID: 15241433 [PubMed - indexed for MEDLINE]

[T_Mom]

Thanks for posting Dr. Fuhlbrigge's response Sheeboo,

As you noted you asked him about his web-posted comment: "Its important to recognize that antibiotics wont treat neuropsychiatric symptoms." and you went on to ask if he had any studies regarding this...

 

I really appreciate the fact that he honestly states that this is not an area of research for him professionally

and that he is basing his comment on the construct of PANDAS.

 

You noted he then went on to say "but these drugs are not known to act directly on the brain to change behavior or alter neural signals related to movement disorders." (re: antibiotics)

 

He may be interested to know that one of the NIH (previous) researchers that treated our daughter was not at all surprised when I called to excitedly tell her that within 48 hours of starting Amoxicillan (with an illness related exacerbation) our daughter,s symptoms were lessening (OCD and mild tics)...and then a few months later the same effect only within 24 hours of starting Amoxicillan full-therapeutic strength. This same doctor indicated to us that in NIH research they had found Amoxicillan to have anti-inflammatory effects, though this finding was not published.

 

He seems like a compassionate and caring doctor and certainly I do appreciate his honesty in also noting, as you said: "...I am, of course, unable to answer to your question of whether your daughter's improvement was related directly, indirectly or not at all to the antibiotics she received."

[sheeboo]

Yes, TMom, we had the same reaction: tics and ocd 90% gone within two days of antibiotics (Omnicef) and completely gone after 21 days. I asked Dr. Fuhlbrigge if he thought this was purely coincidence and the email was his reply. All this is just so confusing.

 

I will try to find the study you mentioned. Thanks!