so many kids in so much pain, isolation, a world of misunderstandings....
Ponytail, Cootiegirl, NP40, mlkeen, barrie and lymemomtoo were among the writers.
We have a 15 yr old who had her first rash at 6 and a half. she's in 9th grade now. I had a teary session with the teachers today trying to explain the good days-bad days thing. Why she looks healthy and vibrant when they see her, and then she disappears for several days, supposedly sick and not able to do her school work.
Her Lyme has not been as debilitating as some, but the fierce headaches and all the other stuff are not easy for her; the social issues can be a problem too; she cannot compete in sports or do regular dance -both of which she loved. every year we thought it was over. then a few months would go by AND WHAM! the fatigue etc back again.
I think asking kids if they want to connect is good. i am not a fan of chat rooms for kids (this is my first week in chats!). In fact, we ban them. It's too easy. IM has its own issues. But a good email conversation is okay.
please send me personal message if you have kids who might like to email. my daughter might like that too.
All the things you have shared really help. After only a week here i don't feel like a newbie anymore!
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
PM sent. There are others on here with teenagers who have lyme.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
james doesn't write any more than he has to. He's not likely to write, but I'll ask him.
He too had big problems with teachers smashing his educational self-esteem. No one would believe he could be so sick, just hours after being in school.
Posts: 1572 | From Pa | Registered: Jun 2001
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I was just reading on Yahoo's LymeAid for Parents about this very school issue. A responder suggested this video for help in educating the educators: "The Students, the Educators, and Lyme Disease". It can be purchased from www.timeforlyme.org at this link: http://www.timeforlyme.org/TFLWebDone/AdditionalResources.htm
Best, Karen
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
My 18 year old daughter just got diagnosed with lyme and would probably like chatting with other kids. She is really starting to have problems in school now that she's taking doxy.
We are hoping that her "learning disabilities" are lyme after all.
Count us in on the teen chat. Posts: 460 | From Illinois | Registered: Aug 2005
| IP: Logged |
posted
There is a lyme kids internet forum somewhere.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
If anyone has found this forum that has been mentioned, please let me know.
I have tried to get into one to check out and couldn't get in. I got into one that was titled lymeteens or teenlyme (duh!, I have lyme) and it was a guy posting pornography and asking lyme teens to be penpals! Despicable.
On that note, does anyone know how to report this stuff. I called the police here and didn't get anywhere. It was on Yahoo.
posted
did get a couple of messages. my daughter may write to a couple girls her own age...will see how this goes before we overwhelm. thanks for the outreach.
hope that site doesnt exist where other kids might get drawn in!!!
wishing you all better days ahead!
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
God bless all of you loving parents...hope you are aware of how much your love impacts your child.
best hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by char: I have tried to get into one to check out and couldn't get in. I got into one that was titled lymeteens or teenlyme (duh!, I have lyme) and it was a guy posting pornography and asking lyme teens to be penpals! Despicable.
On that note, does anyone know how to report this stuff. I called the police here and didn't get anywhere. It was on Yahoo. Char
Char, I'm not sure but here are my 2 guesses:
1. yahoo webmaster with the specific site so they can check it out.
2. FBI same as no. 1.
I was shocked to hear last night about the child porno "live casts" of children being sexually molested & it going all over the internet service. 1 of 18-20 people was a 35-40 yr. old, frumpy Iowa woman! How disgustng! I hope they all get caught & put into prison for life.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
jons, So sorry to hear that other parents are having to deal with these issues..Any illness(es) can be hard to manage but I have never seen anything that can ruin the health and social well being of any child any worse than this does.
My daughter developed many psych issues along with the aches, pains, etc..They have ruined much of her normal life..She has developed OCD, has anger rages, used to have nightly episodes and unbearable head aches, has diminished memory and cognitive skills, makes poor decisions, and developed juvenile diabetes and osteoporosis.
While she has bounced back in some ways, she is refusing meds and hates all Drs..She plans on getting an apartment soon and trying it on her own..She thinks that she now has ss disability it will take care of her expenses..
Just try to watch out for psych issues and blood sugar issues..I think they can often be precipitated by lyme and co-infections..If my daughter was more stable, she might be a good internet buddy,but right now, she would not be interested..
I pray that someday she is well enough to persue her past dreams and maybe she can become an advocate to help others with these horrible diseases..Good luck..
Also the teen chat is from the Chester Co. lyme disease support group in PA..They are a very active support group and started it for the kids and think you have to even petition to join the group..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
bettyg
Unregistered
posted
Char, when driving in town today, I heard a commercial about porn on internet. So I tried to write this down at the stop light.
www.cybertips.com ... I don't know how to spell cyper... perhaps not .com; remember with my neuro lyme; I only catch so much.
Today in my in-box came this, so I'll copy/paste before deleting from my inbox on internet porn!
" We need to Protect our Children
Dear Mrs. Betty
Internet p*rnography is a problem that is growing exponentially. It is invading our homes and businesses, stealing our children's innocence, and creating a generation of p*rn addicts. Research shows that:
* there are 420 million p*rnographic webpages on the Internet today, * The online p*rnography industry generates more annual revenue than ABC, NBC, and CBS combined, * the largest consumers of Internet p*rnography are children ages 12-17, * 70% of adults who use p*rnography view it while at work, * P*rnography has been clinically proven to be extremely addictive with children.
The lack of effective technological and legislative solutions is further aggravating a problem that has quickly grown out of control and will result in a social disaster if left unchecked. Today, if you are connected to the Internet, you are connected to p*rnography. You have no choice.
Finally, there is a solution that gives ALL people a choice over what type of Internet content they let into their homes and businesses. People will be able to choose to let it in, or they can choose to keep it out. It's all about choice.
This legislative solution has overwhelming support from politicians and the dept of Justice. All we need now to make it happen is a strong grassroots effort during this election cycle.
Our goal is to have 1 million concerned Americans go to our site and take a few minutes to send off letters to their politicians.
Please go to this link www.cleaninternetchannel.com to find out more about the solution and send your letters and become a part of changing the Internet for good.
Also please forward this email to as many people as you know so we can reach our goal of 1 Million people sending letters to their Politicians before November 2006 .
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic