sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
does anyone else have an interest in keeping a single thread going here that is oriented to parents (with or without Lyme) who have kids with Lyme?
i'm not saying to not post questions in medical or wherever else, just that any parent could find a single place here about things we might find helpful.
any thoughts?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi dilly,
I'd love to see a link for things that pertain to children with Lyme disease in one place (a website??)...such as:
school issues ( 504, IEP, links to pertinent articles, education law, etc...)
medicine issues (how to get kids to take it probiotics )
emotional issues
children's symptoms
children's rashes
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
fancy meeting you here, hsbmom. i just finished a post to you in BeJoy's thread.
yep, your list sounds like where i am going too. i have hopes of putting together a website, and have all the resources and help i'd need to get it going.
realistically i know i can't do that right now- i have my own major major neurological stuff going on now and a 5 year old with primarily neuro symptoms/herxes who just began tx 10 or so days ago.
i thought helping to launch just a thread here on Lymenet would be managable an helpful inthe meanwhile.
thanks for your thoughts! dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Count me in please
Does this site come with free baby sitting service too?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
ah, free baby sitters. what a lovely dream THAT is, Geneal!!
my darling son is upstairs screaming and punching his dad and laughing, somehow all at the same time.
when this too shalt hath passed, and if i'm still standing later, i'm going to start cutting and pasting related posts from the board and organizing them into a single Parents thread here in General.
i don't think consolidating old posts is against the rules. i assume someone will tell me if it is.
dazed dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
info from times past will not fit here in one usable thread.
i'm looking at a wiki solution.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Will this do? Free wiki sites at PeanutButterWiki:
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
thanks, Shaz.
that wiki-site is very user-friendly.
i've begun transferring info, but it occurs to me it would be a good idea to get permission from those parents who have written the posts ..
thanks again- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Dilly,
While the info itself might not all fit into this thread could you put links to it with a brief description, or in categories?
Just a thought. Hope it makes sense!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Lyme-diva:
the categories so far are:
- Congenital Lyme
- Testing Children for Lyme (and TBD's)
- Children's Symptoms
- Herxing Kids
- Probiotics for Kids
- Counseling and other institutional support
- parents' advice to other parents
i'll be happy to add whatever categories seem helpful. i am a new to Lyme treatment for kids, my DS is only 5, and i know but am far less informed about older kids/teenagers with Lyme and the different challenges they/their parents face.
of course i'll have a link here to the webpage- just want to secure some permissions first and build some more...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
yes, sounds great. Just what I got on line to look for. We start treatmnet with my 7 year old son this week. Am very nervous and would info on kids and supplements....
Posts: 368 | From freehold, nj | Registered: May 2007
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posted
I like this idea very much. My daughter has had Lyme since age 7. She is 18 now.
Posts: 217 | From New Jersey | Registered: Apr 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i'm glad there's interest.
please bear with me-- it will take some time to pull this together...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
sometimesdilly, Sorry I havent responded sooner.
this i a great idea, and like many others, it's exactly what I came looking for when I checked out Lymenet.
The only section that I would add on is success stories, it would be great if parents of kids who have gotten better would post, so that us parents with newly dx'd kids would know that there is hope.
It would be so much easier to get through those days when our little angels have traded in their halos for lyme rage horns and pitchforks, if only we knew it would end!!!
Best of luck and of course let us know when it is ready to go.
posted
sometimesdilly, Sorry I havent responded sooner.
this i a great idea, and like many others, it's exactly what I came looking for when I checked out Lymenet.
The only section that I would add on is success stories, it would be great if parents of kids who have gotten better would post, so that us parents with newly dx'd kids would know that there is hope.
It would be so much easier to get through those days when our little angels have traded in their halos for lyme rage horns and pitchforks, if only we knew it would end!!!
Best of luck and of course let us know when it is ready to go.
posted
I, for one, would love to see a kid's site. Although I am NOT the typical Mom. I am a just turned 60-year old grandmom. My husband and I are raising our 7 year old ADHD/bi-polar grandson. He contracted lyme's in June and was diagnosed in mid-August. We live in Ocean City, Maryland which may sound wonderful, but it isn't when you need medical treatment! He pedi put him on Amoxicillin for 6 weeks which completely counteracted all of his psychiatric drugs. So we have NOT had a good school year or home life. We just started him on Doxycycline 6 days ago with very little change so far. We have no family in the area, so no support system. And I laughed when you mentioned a sitter. He would probably tie them up and call the police if we tried to leave him with one. So it would be WONDERFUL to have other mothers with similar concerns to "talk" to. Posts: 3 | From Ocean City, Maryland | Registered: Oct 2007
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