Aces High Bulletin Board
General Forums => Aces High General Discussion => Topic started by: Tac on December 19, 2001, 09:26:00 PM
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Folks, this is from one of my buds in the Battlecruiser forum, the daughter of one of his friend needs all the help she can get. If any of you have any medical info or friends that may lend a hand please, e-mail me at tac@cfl.rr.com . Ive deleted the last portion of the letter, as it says what room she's in, but she is in Corpus Christi , TX.
"By now I'm sure everyone has heard all sorts of
stories in all sorts of ways about my daughter and
what we're going through right now! I had to come in
tonight to take care of a few things around Cuero-way,
and spend some time with my boys. What I went through
today and the past few weeks I wouldn't wish on even
the worst of enemies. Kathy is six years old for some
of you who may not know us to well. She came down with
a strange and so far, unknown virus the week of
Thanksgiving. She's had vomiting, excrussive
headaches, back, neck, & leg aches. We have been to
San Antonio to a specialist and he performed an
endoscopy on her last week to find that her throat,
stomach, and intestines were full of ulcers. Saturday
night she had stroke like symptoms and was transported
to Driscoll Children's Hospital in Corpus Christi
where she spent a few days in PICU. We were moved onto
the floor in a regular room day before last. She has
had initially the endoscopy and bi-opsies of her
stomach and small intestine, a cat scan, mri/mra, two
spinal taps (the second today), more sticks and pokes
with the needle than a swarm of bees could give ya! So
forth and so on... We are still in the fog about what
is going on, they have brought in an infectious
disease specialist to help, with his team, find out
what is going on. Her white blood count is very high,
she has pressure on the brain, her optic nerves in
both eyes are swollen, the eeg showed abnormal brain
waves on the left side of her brain and now they have
ordered the second mri/mra series on her and a new set
of cultures. The best we could get out of this new Dr.
today was she has a fungus type of meningitis. It will
take several days for him to determine which strand of
the virus it is. Supposed to be hundreds of different
types. Anyway, so we are still not certain as to the
why's and what for's yet. The wait and watching her
suffer are a tremendous stress, to be so helpless in a
situation which we can only give to God and pray
about! I wanted you to hear it straight from me and
right now that is the best and most I can tell you
all."
And the next day my friend posted this:
"Here's the scoop, Kathy is NOT getting any better and the Doctors cannot seem to figure out what is wrong with her.
They are saying Fungal meningitus, she has swelling of the brain, ulcers in her stomach intestine etc, and she is in EXTREME pain.
I need all the help I can get here guys, If anyone and I mean anyone knows anything about such a disease, or knows someone who does, please contact me ASAP. We need to get her help QUICK, she is in BAD shape and I mean BAD!!!"
:(
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I can pray tac, and i will.
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Originally posted by loser:
I can pray tac, and i will.
As will I.
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University Of Virginia has an extensive med center. They're one of the best in the nation and often diagnose or find stuff other dont. They do ALOT of research and are a break though sort of place. Get them to CALL then ASAP and see what THEY say TAC!!
xBAT
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Thnx guys. I've fowarded the link of this thread to my friend and also Xbat's info. Keep it coming please.
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Are prayers are with this suffering family though we know them not.
May God bless them with the strength to endure.
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All I can do is ask the MAN to help. The request is on the way. God Bless.
Mav
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Hey Tac;
I don't know that much about these types of diseases but I am joining in with the others in offering up a prayer to the Big Man upstairs. I know many more will most likely help out in this same way.
Keep the faith brother something will come up soon.
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Adding right now to the power of prayer!
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As the parent of a daughter I can only imagine the anguish. I sincerely pray that God sends the answer quickly.
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Being so far (from Italy) I cant say if this can help, anyway I have had for my job far contacts with Infectious Disease Center in USA. Reading what you wrote it seems this is something about a rare infective fact.
One of the most advanced Center is John Hopkin's infectious disease Center (Dr. Bartlett I think), where you can find persons who have a strong preparation in infectious diseases area; probably one of the best center all around the world in this field.
Don't know if this can help, or maybe you think of it already, but take my point as a little contribution, and a way to be near a person sharing his pain (im father of an11 y.o.)
http://www.hopkins-id.edu/ (http://www.hopkins-id.edu/)
Nib
[ 12-20-2001: Message edited by: stegor ]
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[ 12-20-2001: Message edited by: stegor ]
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Our thoughts and prayers are with the family and loved ones during these trying times.
Nim
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I read this post and I am very frustrated that I cannot help except to offer moral support..
There is nothing worse for a parent than having a sick child...I hope your friend finds the strength to get through this.
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God I wish I could offer some type of help. All I can do, is pray for that poor little girl, and her folks.
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Hey Tac: I'm gonna forward this to my sister.
She's a med student with some odd interest in viruses and bacteria, and she probably knows people who've researched such things. She's also close to done (I think, never can figure out how much she has left). Am giving her the link now.
Hang in there bud!
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Tac,
In my limited experience....and due to the fact that I don't really have much data to go on, I would be looking at chemical poisoning and there should be blood tests to check toxin levels. This sounds an aweful lot like a mercury or lead poisoning....probable ingestion. Really really need more info though to base any sound judgement on this.
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Sad. Very sad. :( I'd offer a prayer, but I don't belive in God, I'm afraid. When I read things like this it restores my belief that there isn't a God. Surely if there was one, these things wouldn't happen? Anyway, it's hard for us non-religious types to know what to do in situations like this. People who can pray still feel hopeless, imagine us not being able to do even that.
I can only send some positive energy your way, what can I say? :(
Christmas is the most exciting time for kids. This is just too sad.
p.s. Never give up hope
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Prayers are power, add mine to the force.
Sax
13th Tas
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She has mine and my families prayers.
My son went thru menengitus and we almost lost him. Our doctor was Dr. Carl Phansteil in Tulsa, Oklahoma. He knew immediately what was wrong. I do not have his number, but 1-918-555-1212 will have it.
God loves this child...pray
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Thnx guys. I've given them the URL to this forum. If you have anything post it here or Priv Msg it to me or e-mail it to me, ill foward it to them.
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As anyone who's ever been to a doctor or needed medical treatment will know, sometimes they can make mistakes. And at the end of the day, if the doctors are treating someone you love, when it all comes down to it, we all like to be a bit more informed, right? So I found a link I found on Fungal Meningitis that maybe the parents of the little girl would be interested in. At the end of the day, it's their kid and not the doctors. In other words, even if we are not experts we can still keep an eye on "experts" and make a judgement on what they are doing.
Anyway, please pass on this link. It explains Fungal Meningitis in layman's terms.
Info on Fungal Meningitis (http://www.musa.org/fungal.htm)
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Rightwng is a docter... ask him... but yes very sad :(!!!!! :( :(
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Sorry, Tac, no clues here. Hope she makes out okay.
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Sad to hear!
My thoughts go out to you and your daughter!
Me being a doctor (though neither ID or Paed), this is how this comes out to me:
That girl obviously has a fungal meningitis, which is higly uncommon, besides in patients suffering from diseases affecting the immune system, such as AIDS, leukemia and/or other blood cancers. I also hear she has an extremely high white cell count, which could stand for a: serious infection in healthy person or b: Leukemia or other blood malignancies. The picture that is described sounds very much like a little girl with leukemia, secondary immune failure and cryptococcus meningitis. This infection is awful, and take a very tough medication to cure, i.e. Amphotericin B administered directly into the cerebrospinal fluid. It can through this regimen be cured, and the repeated spinal taps may very well indicate that intrathecal injections are being given.
To strengthen my hypothesis, id need some questions answered:
Was this girl sick before this incident occured? did she develop bruises easily, did she often get banal infections like otitis/tonsillitis? Was she anemic/pale before this incident?
These are suggestive of leukemoid diseases, which could very well be the centre in all this.
I would be happy to help, and if contact was made between me and this father, i could try to answer questions.
A surgeons view anyway.
God Bless
/stomp
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check priv message stomper. Thnx.
Update for ye guys : They still have no clue what it is she has :(
Keep sending good vibes, every little bit helps.
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Please keep us posted on the little girls progress, Tac.
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I am the father of the little girl, I would like to say a big thank you to all of you who have been praying, commenting, and personally contacting me via e-mail. It is a very trying time right now as I'm sure you are all aware. Kathy is not getting better, but the good news is she's staying stable. We are still unsure of what is causing all this. Her treating physicians are still running more tests, they had to move her IV to her foot because the veins in her arms are just worn out. They are going to do more tests this week after christmas. An x-ray scan, if that doesn't show anything and she doesn't start improving they want to inject her with dye and go into her veins with cameras and see if she has some sort of circulation dis-order. I'm not sure I want them to do that test, it is very frustrating and I am beginning to have lack of faith in this medical staff. I have given them alot of info that I've received from you guys and your links and comments. You know there's alot of test's they hadn't performed and probably never would have if it wasn't for your info. I thank all you once again and God bless you! Dennie :confused:
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Good luck Drummaster.
Zygote
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Well, I'm glad to hear she's at least stable. I hope all the best for your family and Kathy. I'm sure her christmas next year will make up for this one.
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I will keep praying that the attending Docs will have the wisdom to solve this case. I also pray that you have the strength to hang in there. She needs your strength.