posted on November 9, 2002 08:28:40 AM
Hi All,
Thanks for taking the time to read this, and for the ones that help out "" THANK YOU "" !!!!!!!!!!!!!!!
Sorry this is so LONG, but wanted to be sure to share the correct info with you.
I would like to ask a huge favor from all of you. {going out on a limb here, but pretty much, I don't know where else to turn too}
I would like to ask, If you all would take a few min's of your time, and email/talk with ALL of your Friends, Family,doctors, and All of your past, present, and furture ebay buyers, or any one you know with a email address.{see this is ebay related}, And ask them to do the same thing.{to pass it along}
As many of you know, My son died this last summer from a amoeba.
This is something that is perventable........
PAM is difficult to diagnose, that is why they say it is so rare, but I am finding out that it is NOT that rare, 95% of the cases are found out by doing a autopsy, if a autopsy is not done, then how many cases have gone unreported or undetected.
IN the last 2 years the number of reportable cases in the USA have been, 11 in Texas, 4 in florida, 2 in Arizona {just this past october 02}, there may be more, but I think that is alot of kids dieing in 2 yrs, with something they say is so RARE.This is a NATIONAL and INTERNATIONAL PROBLEM. !!!!!!!!
primary amoebic meningoencephalitis.{ PAM } Also known as Naegleria fowleri,which is deadly.that causes symptoms of meningitis, the swelling of the membranes surrounding the brain and spinal cord, and encephalitis, the swelling of the brain.
Some of the 1st Symptoms are Vomiting; headache; drowsiness; low grade / high temperature; , Then you get to hallucinating ; pale, blotchy skin color, super high temperature, and then seizures; then death.
You get this by being in any type/ form of water.WATER can be, fresh, brackish, swimming pools ={in some cases}, water foutains, that can be played in, {we have several here in florida}, retention ponds, lakes, ponds, canels, rivers.
The key here is that the amoeba becomes active when the water temp. reaches 80' or higher.....It is always there.....
Most likely the water goes up the nose, and the amoeba lives in the water, which then goes to the brain.
This is a silent killer that the health dept nor the CDC in atlanta wants to inform or educate the public about,{ they don't have to by law, as it is not contagious and they feel that way also, as it is so rare }I say WRONG !!! The only time to hear about it, is when a death has happened from it.
"You're always asking for a dangerous situation when you go into freshwater, especially during prolonged warm periods," Duma said. "Mother Nature has all kinds of things out there just waiting to attack and unfortunately, some of those things are very deadly."
I am very happy to report tho, that the health dept, and the parks dept in my area, "brevard County" will NOW be posting warning signs at 5 of the 7 lakes here.Why not all of them ??? I don't know. ... It only took them more then 22 yrs and the death of MY SON, to make the decion to put signs up. At least they are doing it tho. I also have a warning letter that will be sent home every year, threw the Brevard County schools, with each child, for the parents. I am working on a letter to go statewide in florida, so that EVERY CHILD gets one sent home with. I am also working on getting a law passed, so the health dept does have to make this public knowledge and to give warnings to everyone concerning this.{ that is taking awhile tho, I'm not giving up tho}
I also am believing to get on a NYC news station ABC, NBC, CBS, to get the word out nationally. If any one can help with this, that would be great !!!!.So far, I'M not getting a responce.
Thanks for taking the time to read this and again THANK YOU for all of your help and for the emails you send out to inform and making a difference. It has not been easy, but knowing that people like you care, make all the difference in the world. I still have days, when I can't make any sence of this. WHY ???
You guys are the BEST !!!!! Thank you Terrilee
P.S. sorry for the spelling typo's. You can go back to taking care of your EBAY auctions and your EBAY buyers.
[ edited by wrightsracing on Nov 9, 2002 09:09 AM ]
[ edited by wrightsracing on Nov 9, 2002 09:10 AM ]
[ edited by wrightsracing on Feb 9, 2003 10:08 AM ]
[ edited by wrightsracing on Mar 11, 2003 09:49 PM ]
posted on November 9, 2002 08:49:27 AM
I've never suffered this kind of loss, but just wanted to let you know my condolences go out to your and your family! Your feelings of loss must be horrific. Our family will prayer that you and your family find peace.
posted on November 9, 2002 11:41:19 AM
quickdraw, being a mother who lost a child I WILL GIVE YOU MY OPINION!....GO STRAIGHT TO HELLO!!!! Just this once, your opinion and you are crap.
This person has gone through enough pain without people like you giving criticism over something so petty.
posted on November 9, 2002 11:53:06 AM
There's a lot of people killed in Bosnia but I don't want to read about it in the Sports section. If she wants respect, show us respect by not posting unrelated issues here. It's not just my opinion, it's also AW rules.
posted on November 9, 2002 12:16:03 PM
Terrilee, thanks for updating us on this. I admire your strength to go on and I hope that your work will prevent this sorrow from happening to another family. Please take care of yourself and once again I wish you the best.
____________________________________________
quickdraw29, this thread is just a "blip" in the overall number of threads in the Outlook and if the info can save heartbreak for any other ebayer or their family it is well worth it to have it posted here for a small time. Now that you know what is here, just don't click on that one little line and it shouldn't bother you further.
posted on November 9, 2002 12:31:43 PM
Put the thread in Round Table and go save some lives. If we let one unrelated thread then there will be a flood of others. No thank you, I've seen other boards destroyed like that.
Obviously respect for others rates low for you so don't try to pull my heart strings.
posted on November 9, 2002 12:40:35 PM
Until grief hits personally then you realize what others are going through evidently quickdraw hasn't had that sort of thing happen. Maybe he/she better go to the Round Table where no body cares about anybody.
We all know that this doesn't belong here along with many other threads but to keep harping on it like quickdraw is doing is rediculous. Put this on ignore then you don't have to read it.
Good Luck to wrightsracing in your endevor in trying to locate this horrible disease. Until they find out anything these fountains should be shut down. Maybe it makes the park beautiful but who wants beauty when a tragedy occurs.
posted on November 9, 2002 01:39:37 PM
quickdraw29
I am so very sorry that I have offended you by wasting your time in reading this message {if you even did}, by posting this tread here in the ebay message section.
I know I should have posted in the round table, I know the rules, some times the rules need to be bent a little. In this case, I felt it was warranted, by saving another childs life and preventing the HELL that I have gone threw for another family.
Some times loves see alot and sometimes loves see's little, some times you need to speak up, other times you need to look the other way. This is something I guess you haven't learned yet.
More people look at the ebay board, then any other section here. I wanted to reach 100% of the readers and posters on this message board, not 75% that also go to the round table.
Like I said before, I AM SORRY for inconvience to you or anyone else.
I guess by your post, that I can't count on your help or your support to email this info to anyone you know.??? Do you live in the USA, where is your compassion ??
I'll will post in the round table, that is fine, now I will have 2 post with this info. which is better yet.
Thanks to EVERYONE who tried to open the eyes and the understanding heart?? of quickdraw29, and for standing up for this cause and this thread.
posted on November 9, 2002 02:22:58 PM
Hi, wrightsracing. I moved up to Pa from SW Florida, and I will call there tomorrow to see if anyone has been affected by this. Best wishes to you. You have the right to an informed opinion -Harlan Ellison
posted on November 9, 2002 03:14:35 PM
Limpdraw29, Such a compassionate human being.
One person looses a child and & QuickPrick29 is offended by a post on AW which he/she/it feels, belongs in another category:
“show us respect by not posting unrelated issues here”
LimpDraw29- Tell us, perhaps we can help you:--
Do you hate your mother?
Do you hate your father,
As a child; Did you ever see your mother naked.?
You say: “Everyone is entitled to my opinion.”
I’ll tell you what,
Everyone is entitled also to masturbate, but you should show some respect/decorum and do it behind closed doors.
posted on November 9, 2002 03:26:21 PM
i feel awful that you lost your child,you can post anywhere you like,i doubt aw moderator will complain.
i used to swim almost daily in a university pool and i watched them add more and more chlorine to the water and it is ruining our hair and swimming suit.
but then i moved to a different city and started to swim in an apt complex outdoor swimming pool maintained by some foreign workers.
i contracted the bactereia which is now beleived to have caused ulcer HECTOR PYLORI ,and for that i have to take 14 days of medication.
but i am not sure if this is the only bacteria in the pool as now i have case of GERD,or acid reflux and god knows what??
when i confronted the foreign maintenance crew who are resposible for maintaining the pool daily,they admitted they have not changed the water for years.
how many years? at least 2 years,no ,more than 2 years ,more than 4 years??or could be more.
so in our quest for cheaper labor,we have crew who do not change the water in the pool or really understand how chlorine and water get eveaporated under the hot sun can affect the growth of bacteria or fungus ??
neither do they care to change the dead lite bulb in the pool,scrub the sides of the pool or wonder if the filter system is any good or does the guy really is doing his job every morning??
anyway,for years i thought i have a heart problem and what i really have is GERD,acid from the stomach backing into esophagus and it manifested itself several times at nite.
well,i dont want to carry on and bore some of you to death as it has nothing to do with buying and selling on ebay,but water ,yes,water these days are to be avoided unless it is in your own bath tub.
water in a fountain is stale water,water in shallow pool,wading pool etc ,avoid them.
i was in egypt and we cruised the nile and we watched people throwing everything into the nile-dead goat,excretes and what else.
so dont drink water from fountains or streams,dont swim in any water unless you know it is well maintained,sad but this is a price we pay for industrilisation.
i am sorry you lost your son,and thanks for writing to let us know.
posted on November 9, 2002 05:40:36 PM
Hello!
Words can't express how sorry I am for your loss.....I can only imagine how you must feel. It's so good of you to want to alert others to this problem. You must be a very caring person. I had never heard about it until your thread...so I Thank you! I do animal advocacy work within a few groups, and one of our most helpful tools for getting the word out are the free online petition sites. This is just a thought...as you said you were having a hard time getting attention. Here are 2 good ones www.petitionpetition.com & ( my favorite) www.petitiononline.com . What we do when we are starting a new campaign is one of us writes the petition, so you must know beforehand specifically what your statement of purpose will be with the petition...are you trying to change government regulation? are you just trying to inform people? etc...
You send the petition to as many people as you can, co-workers,family, friends and ask them to circulate it, and on and on... with all signatures being returned to your email address. After you have begun circulating the petition, try to get
the phone numbers, addresses and Fax numbers of ALL of your state representatives. Wait until you have ATLEAST 500 names ( should'nt take long), then you snail mail and fax those
pages of petitions...and you can hand deliver them too...that is even better, to those
lazy ass polititans and tell them they better do something about this. DO NOT email the results to them, polititans are big on ignoring emails, it's too easy to delete them! wish we could do the same with them!
You can also hand deliver those petitions to your local news channels and tell them, "this is what people are concerned about, you are doing a dis-service to the community by not covering this matter".
By the way, you write beautifully...If you post the location of your petition here I will pass it around also. Another good source are some of the Yahoo groups, you have to sign on... but there are boards there for everything, perhaps you can find a "parents" group, I'm sure they'll help. Sorry if this is long winded...But I can empathize with your need to do something to make a change. I admire your courage!
posted on November 9, 2002 08:12:43 PM
I'm really sorry for your loss. I do thank you for posting here though, I do have two young children, and I've certainly learned something, so consider this a useful post in that you've educated others about something dangerous that they did not know anything about.
posted on November 10, 2002 03:06:57 AM
I am sorry for your loss being a father of 5 children and a grandfather of 1 I would hate to lose even one of my clan. I will pass your story around. My wife is a nurse and will pass this around to her medical friends where we live and down in Texas.
God bless or as we say in Irish "Go mbeannaí Dia duit"
posted on November 10, 2002 12:55:09 PM
I am so sorry for your loss. I would suggest you go to WEB MD and post on that site as well. I am in the medical field and the disease you have encountered is a very nasty one. Unfortunately, this is a disease that goes undiagnosed a great deal of the time. The symptoms mock several other diseases and so many times the diagnosis is missed.
posted on November 11, 2002 08:33:42 AM
Wright- so glad you came back to inform us I often wonder how you were doing, I too will pass it on and thank you for the information as I have children (I also believe adults can suffer from it) anyway good luck to you in getting the word out, just post everywhere. Have you thought of the shows like Oprah, Phil Donnohue etc.. keep nagging and let us know what we can do, besides take out quickdraw.
Our prayers are with you and your family.
posted on November 11, 2002 04:48:57 PM
you should probably search the Orlando Sentinel's archives. i think it was just last week that Gatorland announced it's closing and said that it didn't have anything to do with a federal probe. there was a death, presumably your son's and an illness that nearly killed another child. check the story out to see that i got my facts right. the Orlando/Orange County Health Department might also be of assistance (although most government agencies are fairly incompetent here).
posted on November 12, 2002 12:58:47 PM
<<<ghallgren
posted on November 11, 2002 04:48:57 PM
--------------------------------------------------------------------------------
you should probably search the Orlando Sentinel's archives. i think it was just last week that Gatorland announced it's closing and said that it didn't have anything to do with a federal probe.>>>
This is incorrect. The attraction that is closing is GatorJUNGLE, not GatorLAND. Please double check your facts before posting them so you do not cause needless hardship to innocent parties.
[ edited by sword013 on Nov 12, 2002 12:59 PM ]
posted on November 13, 2002 04:27:14 AM
Terrilee, oddly enough, I had a close experience with this once before.
About 1986 or '87, we were still living in the Houston area. There was a little 8-year-old boy living a few doors down from us who played with my sons.
School started in August, and over the Labor Day weekend his family went to one of the area lakes for the holiday. By Tuesday morning he was suffering incredible pain and was hospitalized; by Wednesday morning he was dead.
Since we were told it was meningitis, I contacted our doctor immediately. He did some checking with the hospital, talked to the attending doctor, and called me back.
According to him, these "parasites" (as he called them) are always with us - there's really not much we can do about them. And also according to him, the problem is caused when the water is sucked through the nostrils, and thus into the brain - causing the inflammation, etc. As far as autopsies - I'm under the impression that the attending doctor(s) knew exactly what was wrong with the child - there just wasn't anything they could do about it. (Apparently, it works so quickly that by the first symptom, it's already too late.)
Anyway, my boys never were allowed in a lake again (although they had been up until that time), and I harped on their blowing water out of the nose, rather than sucking it up.
Perhaps a place like Gatorland should furnish disposable nose plugs? I don't know.
What I do know is that my heart goes out to you, and I will be sure to remember you in my prayers. I'm sure you've heard too many words, and they have all been inadequate. But may I remind you of the an old song that says:
"Farther along we'll know all about it.
Farther along we'll understand why.
Cheer up, my brother; live in the sunshine.
We'll understand it all by and by." ?
posted on November 14, 2002 09:14:47 AMAs far as autopsies - I'm under the impression that the attending doctor(s) knew exactly what was wrong with the child - there just wasn't anything they could do about it. (Apparently, it works so quickly that by the first symptom, it's already too late.)
That is true, some doctors can detect it right away. mostly by the parents saying the child had been swimming in a lake, and also in some cases it will show up in the spinal tap, if you look for it.
The problem is, most feel that it is rare, or that is what they have been taught {the doctors}, That unless it shows up in the spinal tab, or the parents say that the child had been swimming in a lake, that do NOT look for it.
My son's doctor has had 3 cases of this, my son being the 4th, and because nothing showed in the spinal tab, and NO ONE at 3 different hospitals bothered to ask the IMPORTANT question, was your son swimming in a lake lately or around WATER of any kind.They didn't think it was the ameoba. I even went to my son's doctor and said, could he have this. ?? {the ameoba}{there was a story in the local paper about the other orlando boy that they did say had this ameoba} My son had gone brain dead,when she came to tell us this, this is when I asked her, She said NO,As nothing showed in the spinal tab, I said to her tho, He had been swimming in 2 area lakes. she still said no.But the autopsy revealed he DID have this ameoba.
I know for the boy in orlando, he was all ready hallucinating when they did the spinal tab, and the mother did tell them he had been in the lake.
There have been 3 people that have lived threw this, { they are alive} but what is the quality of life they live is ???? I don't know, as this effects the WHOLE brain. early detection is the key, and having a doctor know, what to do, will greatly increase the odd's. MOST do not KNOW. The antibotic has to go straight IN TO the brain, not by way of the blood stream.As most do.
According to him, these "parasites" (as he called them) are always with us - there's really not much we can do about them. And also according to him, the problem is caused when the water is sucked through the nostrils, and thus into the brain - causing the inflammation
The parasites / ameoba live in the water NOT in us. Yes you do have to get water up the nose,[which is mostly to happen] and although it's possible to contract the amoeba through the mouth, ears, eyes or other orifices, then it goes to the brain.
Ask your doctor about this, does he have info about this, does he share this with his other patiences {sp} If he say's no, Then say why not, YOU SHOULD BE. !!!!!.
ing after reading this......
I sincerely hope you find another message board to suit your taste.