My fourteen yr old daughter has lyme. She has been on AB for over three years and is doing great compared to three years ago. She missed five months of school, and then was on a modified schedule for a while. This is the first year since this all began that she is on a regular schedule. She lost all her friends and was isolated for some time. She was unable to participate in normal kid activities. She has now made all new friends and is becoming social once more. She even does contemporary dance. We saw her LLMD in Ct the beginning of Dec. since she has been asymptomatic for months he felt it was time to try to stop the AB. We were so happy. We headed home to MD, waved good-bye to CT hoping to never come back. Not so fast! She developed a stomach virus that just started all the lyme symptoms back up. I saw it happening but,was in denial. I kept hoping it would go away. But, no it didn't, every day she was feeling worse. Same old,same old. She is back on the AB. Her left lower leg is swollen, she is limiping and just laying around the house again. And we are heading back to CT in April. I always wished for a site where she could communicate with other lyme kids. It is a unique experience. I was wondering if there are other teens out there that would like to communicate with other kids with lyme? My daughter is on the computer IMing a lot. I think it would help her to hear from other kids with lyme. I would love to hear some success stories from parents. I really need one right now. I thought we might be one for one brief moment. I am hopeful this is just a small set back and she will be back dancing in no time. Thanks for letting me vent my frustration over this d--n spirochete.
Posted by lymemomtooo (Member # 5396) on :
Barrie, so sorry..My daughter is 17 and has lyme, bart, juvenile diabetes and suicidal depression along with a few other things..
I agree,the cetes are bad bugs..
There is a teen chat site sponsored by the Chester Co. Pa group..Go to www.LymePa.org for info..I think you have to apply to get on..They have a very active group..My daughter's llmd's son is very involved in the site.
Sorry, I can't offer a success story..WE pray for one some day..lymemomtooo
[This message has been edited by lymemomtooo (edited 06 January 2005).]
Posted by ponytail (Member # 36) on :
Hi Barrie - don't have a success story but, do have a 14 y/o girl whose been doing the abx for about 3 years too!!
We play the CT trip a couple of times a year and since starting Ketek, she seems a little "brighter"!! The fatigue is still bad and coupled w/ her Cerebral Palsy issues, really complicates things!! She is managing on regular school w/ a 504 plan so far and doing pretty good as a freshman!!
She does msn instant messenger alot and has email! I always want her to be able to chat w/ someone who kinda gets what is going on in her world!! Just as I like to chat w/ folks who might understand mine!!
Holler if you need to vent privately or if she wants to chat w/ Katie!!
I also have a lyme teen in my house. He is just beginning to have home tutoring for school. It's been a rough couple of weeks. We are also part of the CT caravan - my other son is responding very well to tx, so he can pretty much move through life with little interruption. But my teenager is sicker and, like you said, can be more isolated by this whole thing...
There is a yahoo lyme chat - called lyme teens, I think. That might be something for your kiddo. Also feel free to email me and maybe our kids could connect up via email and IM. I know my son feels better knowing he is not alone in this difficult journey.
My son has virtually 'met' Ponytail's daughter, and they have emailed each other a few times- I think it really helps - look what it does for us big people! cootiegirl
[This message has been edited by cootiegirl (edited 07 January 2005).]
Posted by Barrie (Member # 1796) on :
Thank you, I will pass along the info. to my daughter. I was just so discouraged last week when she had to go back on antibiotics. She already is doing better then last week. I was just hoping to be done with all of this. This week, I am just thankful for all the people who have been so helpful and of course, Dr. Jones.
Posted by Kait on :
I know I am no longer a teen but I am 20 and I would be more then happy to talk with your daughter. I am praying for your daughter and I hope the abx get her on track again soon.
Feel free to email me for my screen name, she can im if she needs to talk or even vent.
------------------ Young N Infected
Posted by kgg (Member # 5867) on :
I also have a 17 yr old son who is very isolated. He has been reluctant to join a group. His only socialization is through AIM. He hates pity, but probably would enjoy connecting with other kids.
Karen
Posted by mlkeen (Member # 1260) on :
Gosh! So many of us have teens in the same boat. It just makes me cry to think that they will always have to be watchful of this horrid disease.
I look at my son and see the lost potential. He has not been himself since fifth grade. He is in tenth now. Of course I haven't been myself since then either. We are healing together.
He is much better after two years of abx, but not nearly well enough to stop treatment. He is being home schooled thru the IU this year. It is such an improvement over all the hoop jumping of public school. His friends are mostly cyber.
He just wants to be well. Only recently did he ask if he would ever be totally rid of this disease. What could I tell him. My hope is that we all will be.
My heart goes out to you.
Mel
Posted by NP40 (Member # 6711) on :
My son is 14 and has been diagnosed with lyme. He's currently undergoing IV treatment, and has a school provided tutor who comes in twice a week. There's a boy his age down the road from us that stops once or twice a week. He has another friend that he MSN's with a few times a week. We live in an isolated area, so it makes it doubly tough.
I really feel for these children who are homebound. Missing out on all of the excitement of growing up, and having fun with their friends.
My son has been sick since Oct. 2004 and I'm sure communicating with some of the other children would help his spirits. He's at a tough age for boys, where he's developing an interest in girls, but still feels a little awkward around them. He was playing on the football team when this thing hit, so him not being active really downs him. Feel free to e-mail me [check my profile], maybe we can set something up, where all the children can communicate through IM, or e-mail. Thanks. Mike
Posted by NP40 (Member # 6711) on :
Just wanted to say that I talked to my son last night about communicating via the net with other children with lyme. He was all for it. Maybe we could set up a particular time/times during the week where they could all go online together via IM ?
Cootiegirl is right. As parents we come here for support, knowledge, and the reassurance that we're not alone in this thing. I'm sure that it would be reassuring for the children as well. My son has his own e-mail account as well, which he'll be happy to supply for those who like contact via the net.
Posted by kashmira (Member # 6773) on :
My 14 year old daughter has Lyme, Babs, and Erhlichiosis. The past month has been horrible for her. She has always been a straight A student and now she is struggling. But even more bothersome to her, and to me, is her friends' reactions to all this, especially her best friend. Apparently, her friends are tired of her complaining about feeling sick or whining. They don't even seem to believe that she is sick since she does have an occasional good day where she seems more like her old self. She would love to email or IM with other teens with similar feelings/problems. Please let me know if such a connection is available. She feels so lost and so alone.
Posted by arg82 (Member # 161) on :
There are two good Yahoo groups for teens/young adults with Lyme.
I am 22 and have been dealing with Lyme for a good chunk of my life (diagnosed at 15, probably infected since I was 8 or so) so I know how hard it is to deal with all the complications of being a teen with Lyme.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
My son is registered at the lymeteens website but there is not a lot of action, and he's a bit uncomfortable posting like we do here. He has connected with one teen via email, but like all of your kids, he is more of an IM kind of guy....it's a 'generational' thing I guess.
I'm wondering if we might be able to set something up with all of our kids, maybe tomorrow during the day - for those of you with homebound kids....my son's teacher doesn't come until afternoon, so I'm thinking an 'adolescent play date' for them maybe late in the morning, maybe around 11 est via IM....
Parents, let me know if you are ok with this and if your teens are interested. I will talk it over with my son and see if we can pool the kids screen names for them to have an introductory chat tomorrow....then once they meet, they can IM each other when they feel like it..... cootiegirl
Posted by NP40 (Member # 6711) on :
Great idea Cootiegirl ! My son has MSN IM, I'll let him know that tomorrow at 11 eastern [10 a.m. central for us] is hook up time. I'm pretty lame when it comes to these IM things, so I'm not sure how you do that.
Annie, you're one brave young lady to fight something this hideous, this long. My son may be interested in joining your group as well. Is there a certain procedure to join ?
Kashmira, my son is the same age as your daughter. He started in a new school in [9th grade] in late August. Didn't know a soul, but went out for the football team, was just starting to make friends, getting invited to social functions, and then whamo. The insidious lymes hit him in the first week of October. He's been home ever since, so connections with other children are few and far between. One of my son's pals down the road from us, stayed over one night when my son was having a halfway decent day. My wife overheard this boy say to my son that "you're faking the whole thing just to get out of school". Here he sits with a catheter in his arm, a counter full of meds, and this kid thinks he's pulling a fast one. My wife overheard this and was furious, as was my son. My son promptly grabbed his lyme test results, and showed it to him, but it had a negligible effect.
My wife got the boys up the next morning to make them breakfast before this other boy went home. She took out my son's IV Rocephin tube, 2 saline tubes, and a heparin tube, and placed them right in front of this kids plate. His eyes got as big as silver dollars ! LOL. He hasn't accused my son of faking, since.
Cootiegirl, how do we get the children together tomorrow ? Come to this sight, just log on to MSN ? I told you, I'm bad with this stuff ! Thanks Mike
Posted by ponytail (Member # 36) on :
My kiddo is still trying to attend school but, she likes to IM too! I know ususally we let her on the computer between 4:00 and 7:00 if she has finished homework and doesn't have PT etc. She is on MSN messenger but, if it would help her connect w/ others, I'd be willing to join another one! She's 14 y/o and has also signed up on the lyme teen site but, I don't think she's posted anything!
Could we possibly make it a little later in the day? 11:00 AM EST is 9:00 AM here and my son is still sleeping. And after April it would be 8:00 AM, which would be even harder.
Also, we have a filter on our computer system that does not allow access to Yahoo because of the pornography that is allowed on their site. That's why I have never encouraged the yahoo teen sites. So this IM is a much better alternative for us.
Thanks to Cootiegirl for organizing this. Karen
Posted by Barrie (Member # 1796) on :
Ponytail, I will email you directly but, my daughter is in school all day. But, she spends hours on the computer in the evening. So, evening would work better for her. Maybe some of the kids could start it in the day and continue it in the evening for others who can join in then. Maybe we could pick two different times, maybe 12 noon for some and 7pm for others?
Posted by arg82 (Member # 161) on :
Mike (and everyone else),
The Yahoo teen groups I mentioned are kind of quiet a lot of the time but if more people join and pipe up to introduce themselves, I think they could probably get going a little better. It's hard when everyone has such ups and downs and can't always make it to the computer to update.
There isn't any real procedure to join, just the normal Yahoo groups procedure which you're led through when you go to the page and click on "join Yahoo group" or something like that.
There is also a chat area on each group. A while ago I was trying to organize weekly chats on Lyme Warriors but it died out quickly. If more people are interested, though, we could try to revive them. I was trying for one evening a week, at 9:00pm EST I believe. Let me know if you're interested and which group would be better. I'm more familiar with the people on Lyme Warriors because it's been around longer and I know there are a few people who would definitely join in the chat.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
I also wanted to let you know that I've started a new program that your teens may be interested in participating in.
This program is called Lyme Pals and is set up through a Yahoo group. Basically, you can sign up to be "adopted" by someone and receive something from them at least once a month (e-card, paper card, small gift) or you can choose to adopt someone who wants to receive things, or do both! If you're interested in participating, join the group (click the link) and decide if you'd like to only recieve things, only give things, or do both!
Basically it works like this: 1) If you decide to adopt someone, you can go to the participant database and choose someone to "adopt". When you "adopt" someone you e-mail me to let me know who you're adopting and then I'll add your information to the "adopters" database. Then, send them an e-card, paper card, or small gift at least once a month.
2) If you decide to participate by receiving from someone, you can go to the "participant" database and add your information. Then sit back and relax. Once someone has adopted you, you can look forward to receiving something at least once a month.
3) If you decide to do BOTH, just follow both of the above directions.
This program will be a way for Lymies to get to know each other a bit and know that there is someone out there that cares. It's amazing how great a card can be and how much a little gift can lift your spirits when you're down.
Children, teens, and adults are all encouraged to join. If it goes well, I may make a separate group for kids and teens but we'll see how this goes. Since you can choose for yourself who you want to adopt, teens can adopt other teens and get to know each other that way!
Peace and healing, Annie
------------------ ``The best way out is always through.'' -Robert Frost
Hi folks, So sorry not to respond last night or even this morning - I went into 'crash and burn' mode and didn't get moving until 1pm today. My son also had a slow start today, so we never would have made the 11am time I suggested - duh! That's why I don't raise my hand to volunteer many times - I'm unpredictable LOL!
Well later in the evening would certainly work. I think what we need to do is email each other with the kids' screen names and decide if you want them on MSN or Yahoo. Then pick a time that the majority can get together. In my son's case, the weekends are good and flexible. During the week he is in tutoring in the afternoons, then he tries to go to the dance studio to dance as he feels like it, or at least to stretch a little and learn new choreography. Around 6 or 7pm might work or then again, later in the evening, around 10 (when his insomnia begins to kick in).
So let's see what happens. It is great to hear there are many options. And I do agree about the lymeteen site - maybe if more kids head over there, and if there is a chat room, that would be a really good option. And they could make the site a bit more lively! cootiegirl
Posted by NP40 (Member # 6711) on :
Okay, got my son's e-mail and IM off to a few of you. He seems to be looking forward to it. Unfortunately, he's not having a very good day today. If you'd like to get in touch and haven't done so, check my profile for e-mail addy. I'll check into the yahoo group as well.
Posted by kashmira (Member # 6773) on :
My daughter had a really rough two days, but seems much better today. She has hooked up with two teens that have Lyme ( I think through the Lyme teen group on lymepa.org) and it has been very positive. BUT these kids love to IM and you have to know screen names to be able to talk. If someone has a screen name and a time they'd like to hook up with my daughter, please see my profile and email me. I'll get back to you ASAP. Like I said, just the brief emails she has shared with these two other teens has been very helpful. THANKS!!!
Posted by NP40 (Member # 6711) on :
Kicking this back up for any new parents, or children who would like to communicate through IM with other children who have lyme. My son has been in contact with a couple of the children here, he enjoys it very much !
It's funny, we tried to set this up so our kids could IM each other, to discuss their affliction. Seems they talk about everything but lyme ! LOL Check my profile for my e-mail, if you have a teen who would like to join in. Don't be discouraged if some of the kids don't respond right away, they're probably experiencing a bad day, and aren't online.
Posted by kgg (Member # 5867) on :
bump
Posted by SuZ-Q (Member # 5903) on :
Thanks to those of you who made the links available. My 13 year old just signed up for Lyme Teens last week and is thrilled to meet some other kids with Lyme. We don't live in an endemic area, so we haven't met anyone else in person with Lyme and it is great to have this forum where the kids can connect. Thanks so much!!! Suzi
Posted by NP40 (Member # 6711) on :
Bump^ For any new parents that have children with lyme who would like to communicate with other lyme infected children.
Posted by minoucat (Member # 5175) on :
bump
Posted by minoucat (Member # 5175) on :
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Posted by minoucat (Member # 5175) on :
How's this connection thing going for teens? I just talked to one today -- girl, 13, just diagnosed with LD and pretty sick -- who'd like some teen support. Are the links in this thread still good (it's been a while since they were posted)
Posted by mlkeen (Member # 1260) on :
I just read what I wrote a year ago. Much has changed. James is on a new protocol and doing very well, is back in public school, playing sports and making friends. He smiles!
I hope others have improved this year too.
Mel
Posted by Andie333 (Member # 7370) on :
Mel,
That is awesome news about your son! It made me grin just to read it...it also gave me a lot of hope.
