Resources for parents of children with Lyme

[lymegreen]

I'm wondering if any of you are parents of children with Lyme Disease. My brother and sister in law are in that predicament now with their daughter (my niece) and I'm trying to get them as many resources as possible for them to find out more about others with children diagnosed with Lyme Disease.

Do any of you know of child-specific support groups for parents? I really think it would benefit them and would love to hear if you have personal experience with any groups out there!

 

[Trellie]

Your brother and sister in law can be their own advocated by looking for info online. Sadly Lyme is one of the diseases that doctors don't seem to know that much about, at least not most of them. They will have to get as much nifo as possible online, I had to do the same when I was diagnosed with c CM in my brain. Best of luck!

 

[lymegreen]

Thanks Trellie - I think we are fortunate in this day and age that we have the Internet to help us with connecting with others! I think if they can find other parents to share their experiences with it'll definitely help them cope much better.

 

[Trellie]

Yes, exactly! Actually I found most of the info on my specific problem thanks to the Angioma Alliance forum, I'm sure they can find something similar but for Lyme. I was fortunate enough that one of the mods in that forum has that kind of weird brain tumor in the same location I do, a very very odd location. So yes, forums can be specially useful! Waaaaay more than most web sites. I've learnt much more about angiomas thanks to that forum than thanks to any doctor or web site. Your brother and sister in law need to do their own research, because you can't trust doctors nowadays to consider everything.