cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
My son is having a hard time coming to terms with this illness and how it can slow him down at times. Like many lyme kids, he's missing school and not always up for doing your basic fun and harmless teenage things. It's tough watching a 6 ft guy reduced to tears because he feels lousy.
I know many of you have younger kids with lyme. Anyone here have a teenager that would like to chat with another teenager about how they are coping? I remember seeing a lyme teen chat room somewhere, so if anyone even has info on that, it would be appreciated.
On a more positive note, my younger son is showing some very good response to his treatment and we are thrilled! cootiegirl
[This message has been edited by cootiegirl (edited 09 December 2004).]
Posts: 1728 | From New York State | Registered: Oct 2002
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posted
I'm 19, and I would love to chat with him. Not that I can say I've exactly come to terms with it, but it sounds like he and I are in similar places on the acceptance and fear scales (I was diagnosed in october after years of running around in the wrong directions).
Just send me, or have him send me, an e-mail. I have instant messager and MSN messager if that helps.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
CG, the south eastern PA lyme support group has a teen chat..I do not have the address at the desk but you could probably look up support groups on here and find it.
One of my daughters Drs son is involved in it.
I have never been able to get my daughter to search for it..She has almost become a hermit with no friends..
She has had 2 picc lines and could probably answer your son's questions if he wouldn't mind contacting her. She has lyme and bartonella and takes IV Doxy and Rocephin.
It has been challenging to have this and to go to school part time..She does not make any effort to cover it so all know that she is sick..She has wanted them to see it since some used to think she was crazy. Now they know she has a disease.
We have some accomodations at school but not much extra for the picc line..I do not have permission to infuse in school so when we run late in the am, I have had to go in to be with her to finish.
One of her teachers told me in an IEP mtg that many of the kids were scared of the picc line in the beginning of the year..She said that even she was a bit concerned but all have learned it isn't a major issue anymore..They look beyond it and have figured that she has a brain and something to offer.
If you have an email listed, I will send you my daughters address if he is interested..Please tell him if so to put something about lyme in the subject area so she doesn't delete it by accident.
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
My 16 year old son has lyme and just wants to take his meds and get well. He doesn't know all the horrid details.
After being sick in bed 50 days last school year and of course many days going down and then getting better we had to do something different with school.
He attends the cyber high school run by the 5 county Philly area IUs, 21st Century. It is housed out in here in the Chester County IU. It offers the flexibility my son needs and requires him to be his own manager of time. It is certainly an improvement over regular high school. My son has been sick less so it isn't exactly a fair conparison, but we don't spend our time trying to meet deadlines that are unrealistic.
He goes into the regular high school for Band and CAD so does have some time with friends. It is a good option for us.
posted
I wish you could be a fly on the wall in our household. My neice was 18 when she was diagnosed and when she started college with roomates and the whole bit, she too was always down in the lip that she was too tired to go out at night and missed the fun.
Today she is doing GREAT. Her brother almost died from Lyme and he too is great. Both of them took some time to turn the curve but diligence did the trick and they did respond to orals.
From my own experience and theirs, I can vouch for the fact that it truly takes 18 months to see a significant turn around to beging w/treatment. I hope things get better soon. Actually, I know they will. Just hang in there.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi,
I'm not technically a "teen" (I'm 22 now) but I've been dealing with Lyme since I was pretty young (probably infected since I was 8, diagnosed when I was 15) so I'm here if he wants to talk to an oldie like me! I belong to two Yahoo groups for teens/young adults with Lyme. You can follow the links to them below:
My screenname on AIM is arg7482 if he wants to chat! My little sister also possibly has Lyme, she's just shy of her 15th birthday. Right now it's just a suspicion, nothing diagnosed, but hopefully we'll get her situation sorted out soon.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Thanks everyone! I'm going to pass this info along to him so that he can contact those of you that offered to chat. I will also have him check out the teen chat room. cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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Lyddie
Unregistered
posted
Parents, just a note to be careful. Everything you guys say is typical of the stuff that is being used against me in a charge of neglect by the state. We work great with the school, they are supportive of us, but it made no difference.
"Unsubstantiated illness with Lyme disease." is part of the allegations. So is time spent at home (despite school's support), having no friends, seeing multiple specialists (3, at our PCP's insistence) and so on. This looks like Munchausen's to Children's Hospital (they have in-service training on this a lot. apparently). Since we also have a lot of meds in the house, they accuse me of inappropriately managing medical care (using discretion w/meds as instructed by MD's). Don't mean to be a downer, but if I could spare one family what we are going through...
cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Lyddie, How unfortunate for you to be going thru this. I have heard of this problem before from llmds. It's just ignorance piled upon ignorance when it comes to lyme disease, isn't it? cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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