Meningitis
Since I have long since lost track of which information I sent to
whom, this is the general background on Christopher's illness:
He first had what we thought was a summer flu the last week of school
in early July, but when it came back about ten days later, he was
admitted to the hospital on suspicion of meningitis, which a spinal
tap confirmed. Two weeks later he was back in the hospital with
exactly the same symptoms, same results from the spinal tap, so the
doctors thought he hadn't completely gotten over it the time before.
About two weeks after another spinal tap had confirmed that the infection
was gone, he was back in the hospital again with exactly the same
symptoms, same results again from the spinal tap. The doctors did more
tests looking for an identifiable cause, but couldn't find anything.
The diagnosis on his discharge papers said "Mollarets meningitis",
which is a very rare form of recurrent meningitis without clearly
identifiable causes.
Links for Mollarets meningitis:
http://www.musa.org/mollaret.asp
http://www.lef.org/protocols/prtcl-129.shtml
http://www.medterms.com/script/main/art.asp?articlekey=16584
Christopher missed the first week of school, but then he was all right
again. We couldn't let him go to North Carolina with his class for an
exchange program, though, because we were expecting the next "episode"
about that time, which was extremely disappointing for him -
especially since he didn't get sick again the whole time his class was
gone. The next episode didn't occur until the end of November, just as
we were beginning to hope it was really all over.
We had agreed on a "battle plan" with the doctors beforehand, so we
took him in immediately and they went through all kinds of "exotic"
tests, but all with no results. As the doctors said, Mollarets
meningitis is the diagnosis they are left with, if they really can't
find anything else. The good news is that it eventually stops, the
same way it started, with no permanent brain damage.
The bad news is that this may go on for several years.
From the end of summer until the episode in late November, there was a
period of six weeks that he was generally well, although with some
good days and some bad days (and some days of just normal obnoxious
adolescent behavior). Then it was another eight weeks until the
episode last week, which was much shorter and less dramatic than
previous episodes (sheer willpower motivated by a concert?!). We will
just have to see how things develop.
When a friend described to me her experience of meningitis and how
incredibly painful it is, it nearly made me ill imagining that
Christopher has been through that six times already and has to live
with the prospect of experiencing it again and again at any time.
Nevertheless, he is not just a "case", a "chronically ill teenager",
he is still Christopher with all his exuberance and all his
flightiness and everything else that makes him the unique and
wonderful (and sometimes thoroughly exasperating) person that he is.
whom, this is the general background on Christopher's illness:
He first had what we thought was a summer flu the last week of school
in early July, but when it came back about ten days later, he was
admitted to the hospital on suspicion of meningitis, which a spinal
tap confirmed. Two weeks later he was back in the hospital with
exactly the same symptoms, same results from the spinal tap, so the
doctors thought he hadn't completely gotten over it the time before.
About two weeks after another spinal tap had confirmed that the infection
was gone, he was back in the hospital again with exactly the same
symptoms, same results again from the spinal tap. The doctors did more
tests looking for an identifiable cause, but couldn't find anything.
The diagnosis on his discharge papers said "Mollarets meningitis",
which is a very rare form of recurrent meningitis without clearly
identifiable causes.
Links for Mollarets meningitis:
http://www.musa.org/mollaret.asp
http://www.lef.org/protocols/prtcl-129.shtml
http://www.medterms.com/script/main/art.asp?articlekey=16584
Christopher missed the first week of school, but then he was all right
again. We couldn't let him go to North Carolina with his class for an
exchange program, though, because we were expecting the next "episode"
about that time, which was extremely disappointing for him -
especially since he didn't get sick again the whole time his class was
gone. The next episode didn't occur until the end of November, just as
we were beginning to hope it was really all over.
We had agreed on a "battle plan" with the doctors beforehand, so we
took him in immediately and they went through all kinds of "exotic"
tests, but all with no results. As the doctors said, Mollarets
meningitis is the diagnosis they are left with, if they really can't
find anything else. The good news is that it eventually stops, the
same way it started, with no permanent brain damage.
The bad news is that this may go on for several years.
From the end of summer until the episode in late November, there was a
period of six weeks that he was generally well, although with some
good days and some bad days (and some days of just normal obnoxious
adolescent behavior). Then it was another eight weeks until the
episode last week, which was much shorter and less dramatic than
previous episodes (sheer willpower motivated by a concert?!). We will
just have to see how things develop.
When a friend described to me her experience of meningitis and how
incredibly painful it is, it nearly made me ill imagining that
Christopher has been through that six times already and has to live
with the prospect of experiencing it again and again at any time.
Nevertheless, he is not just a "case", a "chronically ill teenager",
he is still Christopher with all his exuberance and all his
flightiness and everything else that makes him the unique and
wonderful (and sometimes thoroughly exasperating) person that he is.
posted by Aileen at Monday, January 16, 2006
7 Comments:
Thank you so much for posting this and posting more sites for finding information! I am a 31 year old house wife and I have been suffering with Mollaret's for the past six years. It comes and goes, especially when my immune system gets low and sometimes an episode lasts a few weeks up to four months. It's just nice to know other's who are in this, I have had a very hard time finding info on this. Hang in there, our prayers are with you.
~Kristen
Thank you for leaving a comment on our blog, Kristen.
At first I was startled to find a comment from a stranger, but when I started reading your blog, I realized that you cannot be a complete stranger. When I showed your blog to Christopher, just the look of understanding and sympathy on his face nearly brought tears to my eyes.
This evening when he told me he was scared, I suggested to him that perhaps the experience of missing out on things that are important to him can allow him to enjoy it that much more when he is well. I hope that might work for you too, but be assured that you and your husband have our sympathy - we know what it is like. Christopher especially asked me to leave a comment on your blog this evening, but that didn't work, so I hope you might still see this.
Happy birthday from Austria.
I came across your blog when I did a google. I have a 26 year old daughter that has exepereinced viral menigitis several times. Although she's only been hospitalized once. She appears to have had these symptoms many other times. The doctor has put he on anti viral medicines to help. I know how you fell as a parent, because it's hard to watch your child go through this and fell extremely helpless.
MY DAUGHTER WAS IN A BOATING ACCIDENT 3 YEARS AGO AND SUFFERED A MILD CONCUSSION W/ A SIMULTANEOUS CASE OF VIRAL MENINGITIS. THE DOCTORS SAID AT THE TIME THAT SHE MUST HAVE PICKED UP A VIRUS FROM THE WATER AND THE HEAD INJURY ALLOWED IT TO CROSS THE BLOOD BRAIN BARRIER. SHE WAS HOSPITALIZED FOR 3 DAYS AND RECOVERED FULLY IN ABOUT THREE WEEKS. SINCE THEN SHE HAS HAD TWO RECURRENCES OF MENINGITIS, AND IT SEEMS LIKE SHE TAKES FOREVER TO REGAIN HER ENERGY. THANKS FOR YOUR POSTS. I'M NOT SURE IF WHAT SHE HAS IS MOLLARET'S OR IF THE DAMAGE TO HER BBB IS ALLOWING OTHER VIRUSES TO INVADE HER MENINGES. HER HEAD CT'S ARE CLEAR, AND SHOW NO DAMAGE. THE DOCTORS HAVE BEEN VERY HELPFUL, BUT AS I'M SURE YOU KNOW, SOMETIMES IT'S A GUESSING GAME. DURRING HER LAST BOUT OUR AREA WAS GOING THROUGH AN OUTBREAK OF BACTERIAL MENINGITIS AND AS SOON AS THE LUMBAR PUNCTURE SHOWED THAT IT WAS VIRAL AND NOT BACTERIAL THEY STOPPED LOOKING, SINCE THERE IS NO REAL TREATMENT. IT WAS A CASE OF JUST BE GREATFUL IT'S NOT BACTERIAL. TELL CHRISTOPHER, SHE'S ONLY TWELVE AND JUST STARTED JR. HIGH, SO SHE CAN COMPLETELY RELATE TO MISSING OUT ON HER LIFE. - STACI
i am a 43 yr old woman from minneapolis with mollarets 8 times since i was 18 hospitalized every time for 3 to 4 days seems as i get older its coming more frequent and more severe i have been on valtrex since july 08 wondering if anyone else has tried the anti virals for a longer time and if its working for them i'm scared too
I am a 43 yr old female who has had what they thought was viral meningits 6-8 times since I was 25.I was hospitalized most of these times. A couple of times I chose to stay home in bed on pain meds because the thought of the spinal tap scared me to death each time. My last bout with this was two weeks ago and my doctor is saying it is molarrets meningitis. I also will start on Valtrex daily and hope that this will keep me from getting the meningitis again. Each time I get it ...seems to take longer to get back to normal. I wouldn't wish this rare condition on anyone. I understand.
How is your son now? I have this horrible disease and would love to know if there is anyone out there that knows of any treatments other than valtrex???
I am having my 30 or 40th episode right now. I lost count a long time ago. This time it is really bad and I would like help from my community to find out any other treatments.
Please update me on your son and I am praying that he is in remission forever!!
Thank you,
Deana dabendroth1959@yahoo.com
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