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Q: Brain inflammation and staphylococcus aureus ( No Answer,   3 Comments )
Question  
Subject: Brain inflammation and staphylococcus aureus
Category: Health > Conditions and Diseases
Asked by: aw91001-ga
List Price: $50.00
Posted: 17 Feb 2004 05:21 PST
Expires: 18 Mar 2004 05:21 PST
Question ID: 307598
What links have been discovered between brain inflammation and
staphylococcus aureus and what researcher or clinician is on the
forefront of the issue? I have done a basic Google search and
discovered mention of "small colony variants of SA" that may play a
role in brain inflammation. Urgent request; young child in serious
condition. Thank you.

Request for Question Clarification by nancylynn-ga on 17 Feb 2004 12:42 PST
Have the doctors used the term "meningitis," which is inflammation of the brain. 

Also, have the doctors said if they've found S. aureus anywhere else
in the child's system: in the upper and/or lower airways,
cerebrospinal fluid (CSF) and stomach?

Clarification of Question by aw91001-ga on 17 Feb 2004 13:56 PST
Thank you for taking this on. No, meningitis has not been mentioned.
Here is the history in a nutshell:
2 1/2 year old girl, adopted at 11 months from Russia. Vibrant, healthy.
March 2003 - suddenly lost ability to move her mouth and went into
seizures. 31-day hospital stay. Diagnosed as herpes simplex
encephalitis. Regained all abilities except speech. Medication:
cyclavir, still taking.
December 2003 - Sudden seizures. One-week hospital stay. Initially
diagnosed as a recurrence. Head of pediatric neurology at OHSU brought
in; he disagress, however he and a host of other top neurologists are
claiming to have never seen her precise type of brain inflammation and
want to do a brain biopsy since the inflammation is so agressive. They
say, "This is blowing us out of our seats. If you asked each of us
what it is, we would each have a different answer."
In the meantime, it has come to our attention that sometimes a staph
infection can go awry, particularly when a child had a congenital
heart condition, and cause brain inflammation. As it turns out, she
was hospitalized at birth with a heart condition of some kind.
This was mentioned to the primary doctor this morning; she
acknowledged the possibility and agreed to look into it.
The child's MRIs are such that doctors look at it and expect her to be
losing milestones and heading for imminent disaster; yet she is
developing and full of life, except for her speech and minor motor
jerkiness.
As for your question about finding staph in her system, they
apparently have not checked for that precisely.
Your help is enormously appreciated. Jan

Request for Question Clarification by pafalafa-ga on 17 Feb 2004 17:09 PST
Hello there, and let me wish you and yours best of luck.

I found a relevant article, and rather than hold off on posting it
until I (possibly) had an answer for you, I wanted to make it
available right off.

If I find enough additional information that seems on-topic, I will
post an answer to your question.  In the mean time, here is what I
have so far:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12621510&dopt=Abstract

Bone Marrow Transplant. 2003 Jan;31(1):65-7.   
  
Successful treatment of meningoencephalitis caused by
methicillin-resistant Staphylococcus aureus with intrathecal
vancomycin in an allogeneic peripheral blood stem cell transplant
recipient.

Matsubara H, Makimoto A, Higa T, Kawamoto H, Kanda Y, Kami M, Tanosaki
R, Mineishi S, Ohira M, Takaue Y.

Divisions of Pediatric Oncology, National Cancer Hospital, Tokyo, Japan.

Methicillin-resistant Staphylococcus aureus (MRSA) is a common
infectious pathogen during stem cell trans-plantation. We report a
case of meningoencephalitis with multiple abscess formation caused by
MRSA, which occurred in a 4-year-old boy soon after allogeneic
peripheral blood stem cell transplantation. We successfully cured the
infection with a combination of intravenous and intrathecal
vancomycin.

==========

One of your doctors should be able to easily obtain the full article
and/or contact the researchers in Japan is it seems appropriate.

Regards,

pafalafa-ga

Request for Question Clarification by crabcakes-ga on 17 Feb 2004 18:27 PST
Hi aw91001,

I empathize with your worries and feel for your little girl!

Does this child have any indwelling catheters or shunts? You say she
had a heart condition previously. Staph Aureus is commonly inplicated
in endocarditis, and some people harbor this bacteria in their nares.
Has anyone cultured your daughter's nose or run blood tests for Staph
Aureaus antibodies or blood cultures? Has this child has an LP (Spinal
Tap)?

Can you tell us why you may suspect staph? Has she had a bone marrow
transplant or stem cell transplant? Has she ever had renal dialysis?
Finally, where are you located-Country, state? I don't mean to pester
you with questions, but the more we know, the more information we can
find for you.

Thank you!
Regards, crabcakes-ga

Clarification of Question by aw91001-ga on 19 Feb 2004 10:11 PST
Thank you to all who have contributed to this dilemma. I can't even
recall if I have posted this yet, but in case I haven't, Allison is
scheduled for the brain biopsy this afternoon. Hopefully we will know
something then. Again, thank you. Jan
Answer  
There is no answer at this time.

Comments  
Subject: Re: Brain inflammation and staphylococcus aureus
From: nancylynn-ga on 17 Feb 2004 16:55 PST
 
Hello aw91001-ga: 

I'm very saddened to hear of your daughter's illness. My prayers go
out to you and your family.

To be honest, I'm not sure that any researcher here can somehow come
up with something the doctors haven't thought of.

I certainly can't outsmart a team of doctors. (Nor would I accept
payment on this matter.)

Your daughter's symptoms are consistent with the doctors' diagnosis of
herpes simplex encephalitis (HSE). But certainly, you as a parent are
within your rights to ask that she be tested for staph and meningitis.
(If your daughter has staph, then that should have been revealed via
blood work, and she likely would have presented early in the infection
with boils and/or other skin inflammation.)

Because your daughter has been hospitalized several times and had so
many tests run over the years, I would think that staph would have
been diagnosed by now. But definitely ask her doctors about having her
tested.

Here's WebMD's page on diagnosing meningitis:
http://my.webmd.com/hw/health_guide_atoz/aa34658.asp?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348

And their page on testing for encephalitis:
http://my.webmd.com/hw/health_guide_atoz/hw145230.asp?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}

And their overview of herpes simplex encephalitis: 
http://my.webmd.com/hw/health_guide_atoz/nord376.asp?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}

It's my understanding that testing for S. aureus can be done by
testing cerebrospinal fluid, but most testing for staph is done by
blood work and/or nasal cultures, depending on how staph presents.

I'm citing those tests above so you can scan them, because you'll
likely recognize which of the above tests have been done on your
daughter. All you can do is talk to the doctors about the practicality
of pursuing additional tests.

It seems to me these doctors are truly doing all that they can. But I
do think you should ask them just what all they tested her for -- you
need to be very clear on that.

I'm sure your mind is reeling (this is a nightmare), so maybe a friend
could come with you and take down notes while you talk to the doctors
about your daughter's tests so far and which other tests should
possibly done.

(Many people do that in extremely stressful medical situations like
this: bring along a friend to jot down notes during discussions with
doctors -- it really does help. In fact, I have acted as a note-taker
myself on behalf of friends and relatives. Or, bring in a tape
recorder when you meet with the doctors, so you can review the
discussion later, and refer back to it as often as you need to.)

Here's some support groups that may be able to help you:  

The Herpes Simplex Encephalitis Group, based in Britain:  
http://www.esg.org.uk/ESG/Support/Default.asp

The American Social Health Association's (ASHA) National Resource
Center For Herpes provides support groups and chat rooms:
http://www.ashastd.org/hrc/index.html

It sounds to me like your daughter is receiving excellent and concerned care.

I'll keep you and your daughter in my prayers.

Regards,
nancylynn-ga
Subject: Re: Brain inflammation and staphylococcus aureus
From: njbagel-ga on 18 Feb 2004 16:19 PST
 
You may find these articles useful as well:

1.  Encephalopathy with staphylococcal endocarditis: multiple
neuropathological findings.  Can J Neurol Sci. 2001 Aug;28(3):260-4.
Weeks SG, Silva C, Auer RN, Doig CJ, Gill MJ, Power C.   

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11513347&dopt=Abstract

2.  Neurologic complications of infective endocarditis. Neurology. 
1991 Jul;41(7):1015-20. Kanter MC, Hart RG.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11513347&dopt=Abstract

Hope these help.

-d
Subject: Re: Brain inflammation and staphylococcus aureus
From: pafalafa-ga on 19 Feb 2004 11:18 PST
 
Jan,

All the best to you and your daughter.  We'll be thinking about you both.

pafalafa-ga

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