LymeNet Flash: Parents of Lymed Kids Thread?

This is topic Parents of Lymed Kids Thread? in forum General Support at LymeNet Flash.

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Posted by sometimesdilly (Member # 9982) on :

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

Posted by hshbmom (Member # 9478) on :

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 [Razz]

probiotics )

emotional issues

children's symptoms

children's rashes

Posted by sometimesdilly (Member # 9982) on :

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

Posted by Geneal (Member # 10375) on :

Count me in please [Smile]

Does this site come with free baby sitting service too? [Big Grin]

Hugs,

Geneal

Posted by sometimesdilly (Member # 9982) on :

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

Posted by sometimesdilly (Member # 9982) on :

info from times past will not fit here in one usable thread.

i'm looking at a wiki solution.

Posted by shazdancer (Member # 1436) on :

Will this do? Free wiki sites at PeanutButterWiki:

http://pbwiki.com/

Posted by sometimesdilly (Member # 9982) on :

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

Posted by lymednva (Member # 9098) on :

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! [Big Grin]

Posted by sometimesdilly (Member # 9982) on :

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

Posted by dmbfan (Member # 11948) on :

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....

Posted by elle108 (Member # 11730) on :

I like this idea very much. My daughter has had Lyme since age 7. She is 18 now.

Posted by sometimesdilly (Member # 9982) on :

i'm glad there's interest.

please bear with me-- it will take some time to pull this together...

dilly

Posted by lymemommy (Member # 12495) on :

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.

KP.

Posted by sonwithlyme (Member # 10942) on :

Count me in! My son was diagnosed at the age of 9 in August, 2005, still in treatment, has been homebound from school for the past 3 years.

[Smile]

Posted by OptiMisTick (Member # 399) on :

[ 25. February 2008, 03:51 AM: Message edited by: OptiMisTick ]

Posted by sometimesdilly (Member # 9982) on :

OT-

i'll check; thanks for the words of advice.

i've been contacting posters on by one and asking permission to use with edits.

in any case, i need to put this project aside for a short time while i work on organizing a lobbying trip.

until then- dilly

Posted by Shelby (Member # 13406) on :

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. [bonk]